Recovery progress after stroke and vertebral artery dissection

I have been meaning to provide an update on my recovery progress after suffering the vertebral artery dissection and stroke. I had another MRA (magnetic resonance angiogram) scan of my head and neck vasculature on January 30th, about eight weeks after the stroke and six weeks after beginning the anticoagulant therapy.

MRA results

The report I received from the radiologist who read/interpreted the MRA images stated that my vertebral artery had an “essentially normal appearing lumen” with no signs of the dissection from before. This is simply amazing to me that the dissected vertebral artery has healed completely.

While I’m overjoyed, I do need to await the consult with my neurologist to discuss the MRA report and determine what happens next in my treatment plan. That appointment is in about 10 days from today. My expectation is that I’ll still need one or more follow-up MRAs to watch for any potential issues with my vertebral arteries or cranial vasculature—just in case—and hopefully I can scale back or discontinue the anticoagulation therapy immediately.

Vertebral artery images: then and now

Below are images of my vertebral artery showing the dissection and narrowing of the lumen ← as compared to the same after six weeks of anticoagulant therapy → showing a return to normal size and function.

Comparison MRAs showing vertebral artery dissection ← and recovery →

 

And, below is the larger image of the latest MRA of the carotid and vertebral arteries with the right side showing signs of recovery.

My follow-up MRA showing recovery of right vertebral artery 8 weeks after dissection.

What now?

My primary doctor has cleared me for any activity I want to do including running, cycling, and other sports with the exception of anything at high altitudes (> 10,000 ft.) or at extreme pressure (scuba diving). I’m slowly getting back into my fitness/training regimen with an eye toward some ultra running goals later this year. With the recurrence possibility of this type of artery dissection and stroke slim to none, I intend to live life fully and demonstrate that exercise truly is the best medicine.

590 Replies to “Recovery progress after stroke and vertebral artery dissection”

  1. Hi friends, hopefully by now you have read my post. 🙂 as I was going through all the pots on this forums and reading them one by one I still see some of you are still having pain symptoms beyond 1 year and some even after 4 years. This is frightening for me. I had been looking at the “light at the end of the tunnel” thinking after 1 year it should be healed and all symptoms should be gone.
    I also believe in the body ability to heal it self as well. But I truly don’t know how our bodies react to this kinds of traumas.

    Can any one of you tell me What is the typical timeframe for a dissection to heal itself? Even it’s undiagnosed like my case is it possible to be healed by its self and Once it does heal do you still have symptoms of the headaches and neck pain? Or if this condition heal either by it self or by meds and surgeries does it leave a weak artery or a damaged one there that it can give us the same issue in future by bursting or blocking again?
    Or, if it is healed it is all done and back to normal again?

    After it is healed can you resume your normal daily activities, or will I always be on the restrictions of not being able to lift over 10 lbs, no exercising other than brisk walks, etc…

    And, once it heals what are the chances of having a dissection happen again in that same area? Is the wall of the artery weaker after your initial dissection heals?
    By the way, I got my second brain MRI in a year just to see if there was any changes to those white spots that were found previously but everything were the same no changes at all, so I don’t know if the incident that I had caused the spots or the spots were there even before the incidents. The thing is that I never had any brain MRI’s before the inident if I had any I might had known what would he cause for them to appere there.

    My story is up there under my name you can read it and help me here thank you.

    1. I had mine 6 mos ago. My impression is that the dissected area is highly unlikely to be damaged again. In my case, the artery is closed on follow up MRA and will never open again. Hard to damage an artery that has no blood flowing through it. I have resumed all normal activity after 3 mos of rehab. Mountain biking, crossfit (decreased max weight I lift), running etc… From what I understand, lifting should not cause a problem. Just avoid situations with sudden changes in neck position (roller coasters for example). Hope this helps.

      1. Thank you for your respond Tim. Could you tell me if your MRA was with or without contrast and how long was the waiting to get the second MRA?
        My MRA was without contrast I am afraied of contrast. The findings was left internal carotid: Within the left carotid bulb there is a probable flow related artifact which simulate a hemodinamicaly significant stenosis. Then radiologist goes saying to clear up this just do carotid ultrasound to make sure that the finding was artifact in nature. the ultrasound was clear but I do have pain in that side with vision changings. Whoever I bend over, or wearing my socks, or even eating or reading or if I lay on my back or in the left side I begin noticing a darkness covering my vision special my left eye and then I begin having pain and burning sensations on the left side which travels up to my face, scull and left eye. That is why I strongly believe that the MRA findings was right eventhough it was without contrast. So Tim what was your symptopms and how did they find it out and what did they do to heal it? Mine is now 11 mounts of suffering without diagnosis. I’m just hoping that it will heal it self and not getting worse. I had six MRI’s in one mounth just beacuse of this.
        One from brain, one for thorasic, Cervical, Crotid MRA and Cervical MRA all with on contrast but I’m afraid I had to many scans in one mounth that could cause harm in future. I’m not sure how safe Is the MRI.
        Thanks

        1. So, an MRA can only be done with contrast. If your US was normal, than surely the finding on the non contrast MR was indeed an artifact. I would put the carotid finding out of your mind. It is not causing the symptoms you describe. As for my vertebral, they say it is going to stay blocked. I’m living off the right side only. I had a follow up CTA at 3 months out and the MRA at 5 ish months out.

          1. But can Ultrasound show the internal crotied and many other arteries in the neck? Honestly, if its artifact why should I be suffering this much? I posted my story here if you got a time read it please. I’ve wrote about the incident and what happened to me. I think it will make sense to you too. Thank you

          2. Yes, Tim if you read about the new reaserch about the MRI contrast you’ll see that how dangerous it is. They’ve learned that the contrast never leave the body but it stays in the brain. So the MRI without contrast does the job too. As I said I still believe that the report that I’ve got was not artifact but was real. Beacuse I’ve been suffering from the same side so much. The MRA showed the abnormality there they just don’t believe it. I still get the dark vision specially in the left eye. With any positional changes I get the dark vision. What does this show? I think it shows that there must be a damage or blockage somewhere in the artery that causes this phenomenon. I’ve seen multiple eye doctors with a Nero ophthalmologist none could find any isues there within my eyes. I asked them that do you know why you can not find anything wrong with my eyes? Its beacuse it’s not there it’s somewhere else that it’s causing this problem. I’ve been reapiting my self over and over to them but no one wants to listen. I think now I might know what was the cause of those multiple nonespecific white spots that were found on my brain MRI. Probebly on the day of the incident when I accidentally clicked my neck and then heard the warm cycle bursting in my face I had a mini stroke there and then. Beacuse when I tried to sit up everything went to the slow motion at once and my breathing became shallow and my body beacons so warm. I thought I was dying and that was my final second. I think the feeling lasts for few seconds and then I was well. Even I cried out to my sister in the mildest of the slow motion feeling but I don’t remeber that I was numb. I don’t know what it was but that incident could have cause those white spots as well. Cause I never had migraine, head injuries or any accidents to cause those spots. Well even the rediologist listed several cause for it like ischemic, dymilynation, inflammation, Vascular not dismissing the Vasculitis. He also added this findings in this patuotbwith this age it’s not normal at all so do more scannings. But still those so called famous nerologysts didn’t agree with the report. But when I asked them then what could be the reason to have them they simply say migraine or we don’t know. I am so worried that the vision issues might be giving me the warnings all this time before the big storm happens. I don’t think the symptopms that I’m experiencing is normal at all. I’ve never had problem doing my everyday chores but now I do.
            I also have pain in the left side of my neck. It burns as well. the top left side of my back it’s so sensitive and painful to touch. All the left side of my face hurts specially long side of my left ear that goes to my scull and temple. The inside of my left eye hurts as well. I feel pulling and burning in it. I only sleep on my right side beacuse sleeping on my back and left side is painfull and cause my vision to darken. You see it’s been almost a year of suffering without being diagnosed properly. I’m just afraied that I might having a ticking bomb in my neck that can be blown any time. I don’t know if this condition can get well or be healed on its own completely. I don’t know if someone like me goes undiagnosed for a year will survive or healed in its own. I was not on any blood thinners so I don’t know if I am safe or not.
            You see day and night I’m stressing over this condition.
            Thanks for your time and kindness

          3. I just had mine two hours ago. I am still numb. And now I have more questions for the surgeon . Well pray everyone of us heal well. God bless you all for sharing with a newbee like me.

      2. Hi, all! I was diagnosed with a right VAD on June 21st of this year. After pushing myself at the gym I immediately developed intense neck pain and a bad headache. I’ve always had headaches and initially thought I may have just pinched a nerve and anticipated the headache would go away with OTC pain relievers. The following day I reported to work with no sleep and almost made it through the day but had a TIA temporarily losing sight in my left eye as well as feeling in my left arm and leg. After spending a few days at the hospital on Heparin, I was discharged on Coumadin in which I am now therapeutic with an INR at 2.7. My dissection occurred at V3 and V4 with a 90% occlusion. After scaring myself back into the ER they did a follow up CT approximately 3 weeks later and advised V3 appears to be worsening and V4 is receiving diminutive flow and left VA is dominant. I pray every day but I have bad days like everyone else. For those of you like Tim who had complete occlusion or no reopening of your damaged VA, can you advise me if your dissection was completely occluded from the beginning or did it eventually end up closing within the 6 months? I am faithful and diligent in prayer that we are all healing. Thank you guys and God bless you all.

  2. Hello again everyone. I hope you’re all doing better and healing/recovering quickly and smoothly. I wanted to update you all on the forum here about what I have done since Diagnosis of the right VAD at c4-c5 level in the cervical spine on May 3rd. I was very sedentary for the first 6 weeks. I basically took it easy, moved slowly, made sure my head movements were slow and deliberate, even tried to hold my sneezes for as long as possible so as to not disrupt the healing process. My Neurointerventionalist had and has me on Full Strength aspirin (325mg) alone for treatment. I did go on a nationwide road trip with my family, went on winding bumpy roads, up to altitudes of 8000 feet through mountain passes (became quite uncomfortable adjusting to pressure changes at times, felt like I had trapped air for a few days, ears kept popping and I had two ocular migraines after the trip. It was a trip from Florida, to Minnesota, to California and back to Virginia for my 2 month followup. At this time, as of yesterday, there is no blockage of blood flow in the artery. However, it is very narrow, and at the area of the initial dissection, it has formed a ‘loop’ and then the artery widens as it goes up toward the basilar artery. I’m told I’m cleared to resume normal activity at this time. But I’m scared to death of having a garden hose coiled artery now. Has Anyone developed a vertebral artery loop when healing from dissection? From my research it appears that when tissue is healing, it can create a very fibrous band at the site and ‘pull’ on the artery, resulting in kind of a kink. I’ve limited my movement so much that I don’t know whether I have hurt or helped my healing process. I’m wondering if I’d moved More, would it have healed properly.. there was a lot of muscle guarding the first month and I kept my right shoulder higher, closer to my neck to make sure I didn’t ‘pull’ too much.. I’m not sure if this is making sense.. it’s hard to explain. 🙁 but I’m wondering if that caused it to heal with the loop because I gave the area too much slack!? I’m afraid too that having a loop, when I turn my neck, what if the artery gets pinched in the neural foramina space and constricts blood flow…? What if I turn and it kinks and I have an abrupt obstruction of flow to that posterior part of my brain? I’m told I’m at slightly higher risk for strokes now with the loop. Is there still a possibility that the loop may go away in time? My Neuro Doc says at this point I’m healed the way I’m going to heal. I’m 29 years old, my youngest child just turned one and I am so frightened at this point that my days are numbered. I keep trying to memorize their beautiful faces, to relish each moment with them. I live in fear everyday of doing too much because I feel it will kill me. All I want to do is love my family and play with my children, enjoy life together, be that strong independent woman I used to be.
    Sorry for rambling off topic. I don’t have many folks to talk to about this. If anyone has any information whatsoever regarding Vertebral Artery Loop Formation, I’d greatly appreciate it. Thanks so much.
    Samanthajohnson815@gmail.com
    Take care and warm wishes to you all for a fast recovery ❤️

    1. I had a VAD STROKE three years ago and have been on warfarin (anticoagulant) since then. Ten days after my stroke I was discharged from hospital having been told that the dissection would heal itself. Since then I’ve made a full recovery and I’ve led a very physically active life, including jogging, singlehanded sailing and hill walking. Provided you are feeling well, I feel you are worrying unnessessarily and should get on with life and forget your health issues and enjoy your children. Incidentally I’m 69 years of age

      1. Thank you Oliver. I appreciate your words and advice! Very glad to hear you’ve made a full recovery and are doing so well. 🙂

        1. hi, anyone ever go for second opinions in here? I have two different medical opinions on diagnose from 2 top neurosurgeons I NEED A 3RD OPINION NOW , Kind of scary with all these medications.
          GINA

          1. VAD are quite rare so neurologists may not have seen many in their career SI they will work on limited experience and statistics. So it depends on what you want a view on I would say get as many facts as you can that includes ct angiography as well as MRI as well as BP tape and blood tests and ecg much easier to make good diagnosis prognosis and outcome trend with those

    2. Hi All I’m new here,
      I just found this furom and got very happy. Guys I need your help cause I’m getting insane. It’s been almost a year that I’m dealing with weird and unusual symptoms that I never had before. I’ve been back and forth into doctors office just to find what’s going on with me but none could help me even by explaining myself to them line by line. So I began searching on line about the incident that I had and google take me here. I was wondering how Dr. Google find out fast and easy about our condition rather our doctors. Guys I’m 38 and I’ve had an incident eleven mounths ago in my own bed upon my waking up. Unbelievable right. I wasn’t involved in accident, I never been in chiropractic office, I’ve never had big traumas or anything that could have cause this issue. Ok I’ll tell you what happened maybe you can help me to relaxe little bit. Well that morning when I woke up everything was ok at first but the moment I tried to move my neck to face the ceiling I head a big crack in my neck that made me think if I broke a bone there. Then immediately after that crack I felt a warm cycle like burst in my face and made a bomb sound like. I was shocked and I blinked then the moment t tried to sit up on my bed I felt everything going so slow around me like I was in the slow motion movie like matrix. Then I felt warmtnes covering me all over but it was hard to breath and I was feeling that ok losing my councioise for a second. I gathered all my power and hardly called on my mom and sister. The moment they ran to the room I was feeling ok and alert like nothing ever happened. To me it was like few seconds beacuse i felt everything happened to me so fast. But that she ncident left me with huge anxiety and stress. I’ve asked my sister if she saw my neck position before I woke up and she told me that my pillow was jammed under my neck and my neck was slightly bend. I always had difficulties to find a good pillow so I was trying diffrent pillows to find a good one. Anyhow, that day I ran to my Dr. And explained all the details word by word hoping that he can imagine what I went through. But instead he checked my vital and neurological signs and sent me home with some relaxant pills. He told me that It wasn’t a stroke or anything like that beacuse even a TIA would give me some stroke like symptoms for a short time. I went home trusting him that nothing was wrong with me. After few days I felt extreme stiffness and pain around my shoulders, neck and back of my head. I called him and told him that I’m suffering so bad he said take a warm shower and rest it’s nothing. After few weeks while I still was suffering from the stiffness one morning I woke up with weird vision. I was shocked that when I open my eyes I could see big dime size darkness in both of my eyes that were not floters beacuse they did not move they were just there. I tried to sit up looking Stright and they were there I begin feeling pain in my left side of my neck that would travel up to my left down and upper jaw then a long side of my left ear then would to back of my scull then tip of my scull then to my left temple left eye left eyebrow left check around left eye. I even felt the pain inside of my neck at the left side when I was trying to swallow down my food. The pain was weird to me. I called him back and explained to him that what happened to me he told me that it might be a migraine. I kept telling him that I never suffer from headaches or migraine but he told me now I do. The next days I begin noticing that with any move my vision changes and the darkness appears. For example: when I was trying to clean up something I would feel the pain and burning in the effected area and my vision would change immediately. The vision darkenings got so intense that even when I bend my head to eat I would see the darkness as well. So I became like a robot just sit still and not to do anything that could bring the changes. I could not lay my head on pillow as well or lay on my left side beacuse immidatlly the darkness would appear. So I begin searching on line looking for answer that I found a condition nameh GCA or temporal arteritis. Honestly, each of its symptopms were matching mine so I thought this is it I’m dealing with this condition. I called my dr again and told him that he got upset and said that I’m to young for it this and that. But I’ve asked for all the special blood works that were told in the GCA article. Everything can back normal then I pushed him for Brain MRI since I wasn’t feeling ok and at ease. He hardly order that MRI for me. I asked to do it without contrast. So evertijg came back normal on that Brain MRI just on the T2 there were several nonespecific tiny white spots on both
      frontal lobs that were mostly pereferal. So, the radiologyst listed a long conditions from vascular, inflammation to aging spots. But he added this that this findings for her age are not normal so I advice you to do more imagines. But my Dr. Told me that these findings are always normal and are harmless there is nothing to worry about. But I pushed him to refere me to nerologyst which I could finally get. So I saw the first nerologyst and he did his basic rutines looked in my MRI and told me there is no matching between your nerologycal signs and your MRI. So he said that to ignor the findings. He told me that the radiologyst had to put everthing to cover himself since he doesn’t know me or checked me at all. Then I went to see the second third and fifth nerologyst to see what they have to say. The last one was at Stanford nerology Clinics. So they all told me the same. But at Stanford I explained what happened to me and the reason behind the Brain MRI. Nor the attending nerologyst or his studentdidnt get concerned at all. They just ordered a cervical and thorasic MRI just to make sure if there was no pinched nerve there which came back normal so I was dismissed. I had three hours apointment with them unlike other nerologysts office vists that had. I made sure to explain and ask my questions but I got no help. Then I came back home empty handed with the same symptopms. So I thought to see a Rehumiptologyst and she checked my body and ordered so many special tests with normal results and told me that I was fine. But I asked her to help me to get some different MRI’s so she ordered few including the MRA of the carotid and brain as well. Beacuse I kept bringing up the Vascular isusse so she agreed on MRA. Any how all the carotid Ultrasound and other MRI’s came back normal just the carotid MRA showed the
      Blood flow related stenosis on the left internal carotid which the radiologyst called artifact. But to me it was my golden answere beacuse I was the one who was suffering all this time from the left side as well. But to my unbelief none of the doctors and nerologysts got concerned the moment they see the Artifact word there. So I sent the actual CD with its reports to the Standford nerologysts as well and he told me that after discussing my MRA images and the carotid ultrasound imeges the both radiologist and the nerologist believe that the findings its artifact. Then he added that beacue the MRA was without contrast on was based on time fly any brearhing and movement could be the result of artifact findings. I told him that I made sure to be still and not to move even a bit that how the tech was asking me to breath but the nerologyst still said the same. But I truly believe the MRA findings and I’m sure that I got the right result but the doctors are not confused it at all. My vision got little better after all these mounths but if I bend over, or stay in that position or lay on my back or left side I keep getting that darkness with pain and burning in the left side of my neck and head. It’s not intense as it was before but it’s still there bothering me. I even went and see three diffrent eye doctors pulse one Stanford neuro opthamologist my eyes are fine which I knew it in heart too but the problem is from my neck that they don’t believe or at all. So here is me with my long story what do you think guys? Did I survive a stroke? Did I have the stroke the day of the incident? Could all these symptopms that I described related to that incident? Am I still at the risk of future stokes or aneurism? They didn’t put me on any blood thinners at all cause they couldn’t come with any diagnosis so am I still in danger? None of the Doctors that I’ve seen before agreeing to order me another MRA to check and see if the left artery artifact findings is still there or not. So this time I’ve asked to be refered to UCSF nerology to see what they’ll come up with. Guys will this condition resolve by its own I mean if there is a VAD that I’m dealing with will it heal by itself? Will MRI’s without contrast show the healing proses? I be had six diffrent MRI’s including MRA’s in one mounth without contrast I’m afraied that i might put my self in danger by doing all those MRI’s in one mounth.
      Forgive me for writing such a long story but I wanted you to know exactly what happened and how I feel.
      God bless you all for helping each other and be there to help.
      Thank you

      1. Hi Kate my name is Denise I’ve been home from the neurosurgical unit a week today. Like you I was in my own bed I was just going to bed on a Sunday night for my work on Monday morning then a massive headache in the back lower left just above my neck I felt as if I had been hit by a hammer then the pain started going down my neck I couldn’t get comfortable and didn’t even have the energy to get up and take pain killers I got 3 hrs sleep and went to work sat in absolute agone all day with every pain killer available not doing anything for me. I thought it would just go away so didn’t want to run to doctors or a&e so I left it I was off work for the next 2 days thinking/hoping it would go finally in work on the Thursday I was in so much pain and walking like a robot my colleagues forced me to go see a doctor the doctor instantly sent me to a&e I had a ct scan which came back clear and a lumbar puncture and the xanthocromia came back inconclusive so I was sent to the neurosurgical unit for more tests. I had a ct scan with contrast and an mri scan both came back clear and because of this they weren’t going to do the cerebral angiography that was scheduled and repeatedly cancelled the radiologist said there was no point doing it as my scans had came back clear although I was terrified of having it done and she wasn’t refusing I begged her to do it I knew there was something wrong and asked if this would also check my neck she said not normally it would just be the brain but to put my mind at ease she would do my neck too thankfully as it came back I have a vertebral arterial dissection (vad) and if it hadn’t been picked up I would have had a stroke after finding this they had looked back on both my scans and seen this because the first time I think they were only looking for an aneurysm. The treatment is aspirin and amlodipine a blood pressure tablet to widen the artery lots of rest and I’ve now been a non smoker for 14 days I still have pretty bad headaches but hopefully they will go when the tear starts to heal hope this helps I too have 2 kids that mean the world and I saw how much of a fright they got so a massive lifestyle change for me I’m 42 years old and my kids are 17 and 11 X take care xx

  3. Hello,

    My sister has been ill for the last 8 months and was literally today, just diagnosed with VAD and the consultant said she suffered a stroke. Her movement on one side of the body, speech, walking etc have all been strongly affected and over the last two months, her walking deteriorated and she has required a wheelchair.

    Has anyone had an experience with late diagnosis? Did they make a full recovery. Any information you can share would be so welcome.

    Thank you,
    Joanne

    1. So sorry that your sister has had a stroke and that it was not diagnosed for 8 months. I had a stroke 2 1/2 years ago and the neurologist said I had had a stroke before according to the test results. She said many people have undiagnosed strokes. I recall a very difficult episode 10 years before which forced me to the floor because of vertigo and I was on the floor for many hours unable to lift my head and vomiting constantly. I thought it was a vertigo attack and waited until it stopped. I was shaky for a day or so and then resumed my normal routine. I wonder how many people have strokes and think it is vertigo? Your sister will need to be put on blood thinner probably, and address the risk factors that created the stroke so that doesn’t happen again. Tell her she is tough – she survived with no medical intervention! It is not too late to be evaluated for treatment of the rightside weaknesses so that she can work on that. I have had trouble recently with walking because of twisting my ankle on the weak side. The neurologist says the pain in my ankle wasn’t caused by the stroke, but the weakness which allowed the injury to happen is probably related to the stroke. An evaluation of her situation now will develop a plan to deal with whatever comes along. Congratulate her for surviving. That’s no small thing and a cause for optimism going forward.

      1. Has anyone had memory lapse since their VAD? Mine was a year and a half ago and recently I have had a problem with forgetting what I am talking about in the middle of a sentence. I just go blank. Being a manager of a major corporation this has been difficult to deal with. It doesn’t happen a lot but I was just wondering if anyone else has had this happen to them since their dissection.

        1. If I were speaking with you face to face, I would probably ask if you are under some kind of stress? Or new medication? Your neurologist can tell you if the stroke affected the memory, but if it did, it seems it would have shown up before now. If your nerves are causing it, I can make a book recommendation. Sounds as though you have made great progress in your recovery otherwise.

          1. Mary,
            My recovery has gone great. It’s been 18 months and I’m back to my usual self. this is something new with my lapse in thoughts and was just throwing it out there. I love to read so I am interested in the book. Thanks for the response. I have continued to follow everyone on this chat board since my VAD and may God bless you all in your recovery.

          2. A very helpful book for those who suffer nervously is “Hope and Help for your nerves” by Dr. Claire Weekes. I keep my tattered and much-loved copy in my kitchen to show anyone who comes along who suffers from nerve.
            Her books are comforting and effective in teaching the sufferer how to deal with sensitized nerves and regain a normal life. Her family and heirs have set up a website where her books ca be purchased. https://claire-weekes-publications.myshopify.com/ Dr. Weekes was an Australian doctor who dealt with her own episode of nerves and then went on to help countless others worldwide. When Mark mentioned that he lately was experiencing forgetting what he was about to say during a conversation, I remembered that forgetting what words come next can be a symptom of a fatigued nervous system, so wanted to let him and everyone know about the wonderful legacy of books left by Dr. Weekes. I speak from experience or would never recommend this book so boldly. Doctors in general don’t seem to know how to deal with nervous illness, panic attacks etc without using drugs. Dr. Weekes explains what brings one to the point of the nervous suffering, how it presents, and how to cure it.

          3. just had an mra done radiologist say hes does not see a dissection on this test now im really upset ,totally baffled guess I need to do the brain?
            oh btw . you believe ,my nerologist has never said a word to me? she never even told me what happen has someone with her a student learning but he never spoke to me either, i fired her
            to me

          4. just had an mra done radiologist say hes does not see a dissection on this test now im really upset ,totally baffled guess I need to do the brain?
            oh btw . you believe ,my nerologist has never said a word to me? she never even told me what happen has someone with her a student learning but he never spoke to me either, i fired her
            to me

          5. how can they really diagnose a dissection it rather difficult i hear
            Robert no wonder no one post they all duplicates.

        2. Hi Mark, I too have memory issues that are upsetting at work/home environment. When I have to deal with the budget and fiscal responsibilities at work I have to check and double check things. I also sometimes slip on word recall- which never used to happen. Its like I have to scroll through my memory banks to try to grasp a word that should already be out of my mouth. Seems like I have to work just a tad harder than I did before to appear ” normal”, know what I mean? I never had a stroke. Maybe the compromised blood flow throws thing slightly off?? I’m in the running for a prestigious job and this does scare me. The FMD boards talk a lot about comprehension issues- nothing is showing up in scans- but still people are having issues with this. Doctors just don’t know why yet. So, no, you are not alone.

          1. Thanks Leah. If you hear anything from your doctor or find anything out let me know. I go for my biannual MRI soon. (Doctors orders since my VAD). My neurologist said he would take a look to see if anything new has happened that may be causing this.

          2. Hi Mary, I have been thinking of you. Are you sure your pain is from post stroke syndrome and not something else? Have you ruled out other organic illnesses like lupus, diabetes, arthritis , Lyme etc? That’s where I am right now. Going to see a rheumatologist to see if some of my numbness and weird symptoms are vitamin deficiencies or something else that I am blaming on VAD. I dunno, but feel like I need to dot my i’s…

          3. Not sure of anything, Leah. I am still trying to find out my new normal after the stroke. It is an adventure, that’s for sure.

            I don’t like the reaction to the pain meds I have tried in the past because they make me sleepy during the day and cause memory and motivation problems. So I am always looking for solutions to the discomfort which don’t involve impairing my thought process.

          4. Good Morning !
            CELEBRATING 4 MONTHS TODAY TRYING TO RECOVER A STROKE AND VAD GOING TO SEE MY GREAT NEURO TODAY HOPEFULLY SOMEONE WILL GUIDE ME TO A GREAT RECOVERY. SO MANY THINGS I DONT UNDERSTAND BUT LIFE IS ALWAYS A MYSTERY LOL…GOOD LUCK TO ALL WE CAN DO WHATEVER IT TAKES TO GET BETTER ,HAGD
            GINA

    2. Hi SAMANTHA,NO IM IN SUFFOLK NEW YORK BUT THANK YOU AND HOPE YOU ARE DOING WELL,GOD BLESS ALL OF US AND HELP US,DID A MRA 2 DAYS AGO HOPE IM HEALING NO REPORT YET.DID IT JUNE 21.2017 2 DAYS AGO . I HATE TO LAY DOWN AND TRY TO SLEEP BECAUSE THATS WHEN I HAVE ISSUES WITH NECK PAIN AND BODY HURTING ME DONT SEE NEUROLOGIST TILL SEPT I THINK THEY ARE A JOKE CALLED FOR MEDS TO HELP ME NO SUCCESS.I DO HOPE MY VAD IS HEALING IM IN MY EARLY 7Os so im haanging in there fighting to go on. HI al l and the very best to all of you LOVE GINA. HAD MY STROKE AND VAD MARCH 12,2017

      1. Hi Julie, sorry about your friend i’m on baby aspirin and plavix for my VAD .IM 31/2 months after stoke and still have pain in neck and body so i assume your friends pain is par of the course i also have headaches once in awhile but seems Drs pay no mind in my case .hope all goes well for your friend this condition is very stressful for many of us i try to find my patience and believe and have faith all is well MY LOVE TO YOU AND YOUR FRIEND SHE’LL BE OK JUST THINK POSITIVE .LOVE GINA.

          1. I colored my hair at home a couple of weeks after hemorrhagic stroke. I am reluctant to go to a salon where the sinks put your neck in a strain.

          2. My neurologist said that I could never use a sink at the hair salon again. That the position of the neck is the worst one after a VAD.

        1. im just too off balanced and wobbly my poor brain taking a beating i think.AND JUST DID AN MRA …. BUT DOC SAYS ALLS OK LOL GOD HELP US BLAH

      1. Hi Gina,

        You are correct. It’s often (initially) missed! The Emergency Department doctors missed my VAD and stroke. Here are two articles that may be helpful for you. Perhaps you’ve already read them, but they could be of use to others, too.

        NY Times: Symptoms of Torn Artery Are Easy to Miss

        An M.R.I., usually done using a contrast agent that highlights the arterial structures, is now the gold standard for diagnosing a vertebral artery dissection.

        and

        Medscape: Vertebral Artery Dissection Workup

        Diagnosis of vertebral artery dissection (VAD) is usually made by neuroimaging, which has largely replaced conventional angiography in most centers. The 2011 combined ASA/ACCF/AHA guidelines gave a class I recommendation to noninvasive computed tomography angiography (CTA) or magnetic resonance angiography (MRA) as the initial diagnostic study for suspected VAD.

        Hope this is helpful!
        -Robert

        1. Robert thank you !Eventhough they should not use contrast with me, they did, i have STAGE 3 KIDNEY DISEASE AND IT DID MESS MY KIDNEY UP A BIT . BUT TY

        2. Hi Robert ,
          yes I have a few issues having 3 strokes and a VAD. KIND OF SCARY BUT Ido the best i can . had a hemmorage stoke in 2015 now they have me on plavix and low grain aspirin the plavix has many side effects it 4 months wish drs could stop it. how you doing ?

          1. Good morning.trying to recover from a stroke and a dissection would like to know has anyone ever had this blood test >>>>Plavix Response, PLT Function? If yes does it help any? THANK YOU.. GINA

    3. Good Morning !
      I’ts July 14,2017 and yes our medications have many side affects the plavix is whipping my butt so I called my DR. for professional advice,4 months trying to recover a stroke with a VAD. Good luck to all of us.
      GINA

  4. Hello,

    My friend had a VAD two weeks ago and is currently recovering bytaking Lovenox injections and Coumadin.
    She is still having fairly severe headaches daily and I am just wondering if anybody can give me their advice on if this is normal or not.
    The stroke didn’t leave her with any paralysis and her motor skills on the left side are only showing a slight slowing.
    She’s also been easily agitated and quick to temper.
    Thank you in advance for any information…just looking for some answers.

    1. She needs to drop the temper. That is something she can control and MUST control. The headaches she can’t control and they will diminish over time. As one who has been there (VAD over 2 1/2 years ago), I can tell you that she is plenty scared. Time will take care of that and eventually she will not be fearful. Tell her that what she is going through is normal after a stroke, that she is fortunate that the after effects are mild, that she can no longer have the luxury of little temper tantrums. Adopting a calm and peaceful attitude is part of her recovery. Tell her she will be fine and that we all go through what she is going through in the early weeks after a stroke.

      1. The pain does not always go away . It Can be frustrating, when you can’t escape the pain and neck stiffness. VAD recovery over three years.

        1. I was wondering if anyone else still had pain years later… almost 2 years and I have throbbing pain some days at dissection site.. scares me to death always wondering if there’s a clot. Neck gets very stiff and it’s even hard to swallow sometimes

          1. Hi Rose. Yes, I sometimes have that hot, burning pain right in the center of my neck. I also have stiffness at times and a sharp “snap” in my neck. I too am nearly 3 years out from the VAD. (I will be 80 my next birthday.) Neurologist says it probably has to do with arthritis in my neck, after an MRI and an xray. There are no other symptoms with it. Very unsettling when it happens but I chalk it up to my new “normal”. More difficult for me is the Central Regional Pain Syndrome which developed a year or so after the stroke. Some days (especially days of low atmospheric pressure) it is very had to move. Neurologist says that 10% of stroke patients seem to get it. Have tried all the usual drugs and they only dull the brain, not the pain, so I am looking for something that can help with RSD/CRPS symptoms. If anyone else is suffering with this post-stroke surprise, I would love to hear from them.

          2. I did. Thought it would never stop. Found an excellent trainer. We started “unwinding” my shoulder and then my neck thru very precise strength and stretching exercises. Turns out almost all of my pain was from guarding. We went very slow, but I’m finally pain free and have techniques to help myself keep it that way. It’s definitely worth trying. My neurologist approved.

          3. Please follow up on that good news. Who is the trainer and where can we find the type of exercises which “unwound” you? Great to hear- thanks for sharing.

          4. We live in Charleston, SC. I utilized friends and essentially interviewed personal trainers. My trainer is very holistic. Interested in bring balance back to my body by strengthening my left side that was weakened by my strokes. Someone that has a physical therapy background is awesome. Understanding everything is connected. Form of the exercise was more important that anything to isolate muscles.

          5. I have pain to some degree every day . Some days it’s not as bad as others. Some days the pain is so bad I can’t concentrate . I have to take topiramate and another non-habit-forming medication so I can live and work a normal life. it’s been over two years. The pain was worse in the beginning or I have just learned to adapt to the pain.

      2. Easier said than done! It’s okay for people to say drop the tantrums. It’s extremely difficult to come to terms with life post stroke. Take it from a young woman who also experienced a VAD, which subsequently led to multiple posterior circulatory strokes. Everyone is different and we are all individuals and deal with things in our own way. Being a registered nurse myself, I have always advised patients to let their emotions out. It is a normal response to the situation in hand.

        1. My advice to drop the temper tantrums was borne of my own experience because it meant keeping blood pressure down, and high blood pressure was identified as a risk factor for another stroke. I found that flares of anger were not essential, and because I was so afraid of another stroke, I dropped them.

          1. Hi Mary,
            I am late to blog. I had my VAD on October 31, 2016. That’s right! Trick/Treat. I was 52. I recovered pretty well meaning no permanent damage except closed artery and a scare on my brain that show the stroke. I did three months rehab (physical, occupational, speech) and returned to work. I waited five months to seek counseling, which was too long of a wait. Now get this, I am a school counselor. I needed help with my depression. I was functioning but there was a lot of unresolved issues; I couldn’t let go of the old me and accept my “new normal”, why me and why now, no one truly understands what I am going through, fear of it happening again, how people are responding and treating me after ‘the injury’, etc. I can keep throwing logs on fire, but you get my point. I was having a Super Bowl Pity Party about my injury. Now, I do have infamous HEADACHES that are unsettling but it’s a part of my new normal. 10 month out from the injury. I am not settling. I keep fighting everyday to monitor the patterns and to manage the pain through prescription at first, OTC pain relievers, and force myself to rest (which is hard for me because I am naturally restless even at 53 now). All this say, counseling is extremely important. A traumatic injury has occurred and a life change has happened. You need to put in the work mentally as the brain reorganize itself physically. Don’t give up fighting and there’s no such a thing as a mini or minor stroke. A stroke is a stroke. Stay disciplined with meds, diet, exercise, counseling, and doctors appointments. It’s a game changer! Fight!

        2. Absolutely i suffer from that too. this lady doesnt have a clue what shes on about. I suffer from that, slight movement triggers orthostatic effects which means my blood pressure changes on its own – something this lady seems not to understand – heart races, feel like ill pass out, have flight or fight adrenalin rushing through my body for hours leaving me utterly exhausted and agitated – hence the mood changes outwith my control, Spine throbbing, back of head throbbing – first time it happened i had no idea what was going on. Id moved my neck and this wave of adrenalin just swept over me, felt similar to anaphylaxis as i have suffered from allergies before but the similarity was the flight or flight feeling, it wasnt a reaction. Worse thing was it kept going on for ages this really awful rush feeling like i was on drugs but not a nice rush…felt hot. Weirdly it affects the nerves from knee to ankle so bottom part of legs feel numb and tingly. Had to stand up as that eased it slightly rather than lying down…takes hours to pass and then i still feel rough after effects of it days later. Aswell as overly emotional and agitated which isnt me and not how i want to feel. I can literally feel the change in my brain and then i feel like im going to burst into tears – which i have no control over. Second time it happened was about 6 weeks in, leaned back in bed and was holding my legs together like a yoga position rolled back, felt pressure at top of my spine near shoulders and same response kicked in – this time i knew how the drill went as i recognised the symptoms, left me washed out for a week so tired and achey. Then had another in middle of the night about two weeks later, simply when lying on my side id put my left leg out alittle as you do in sleep (as my previous post said im sleeping on my back from now on as i think on my side didnt help) but at that time i was on my side and stretched my leg out. Immediately i felt a weird blood flow sensation at the top of that leg in my groin area, like a block of flow, within seconds that horrible rush feeling started and i stood up out of bed (half asleep) but knowing what lay ahead, that horrible process again. I had no idea what these were until my physio said it sounded like orthostatic postoral syndrome. This to me is one of the worst parts of the VAD recovery, it feels horrible and you literally never know when itll set off as ive tried to watch out and be mindful of posture – but different postures seem to have triggered it every time, Such a relief to hear others suffer from this as i thought i was going mad at first thinking whats going on. Horrible the way it leaves the lower part of my legs tingly and weak but thighs arent affected. Physio said a certain artery Femor is it in bottom part of leg that could be affected more aswell as certain nerves so it bypasses somehow top part of legs and affects bottom part, but waist up is all affected, heart racing, headache, feeling like death. Strange how the body reacts, i did think it was maybe a result of the damage to my back that was triggering the spine to cause it, maybe from reading this its linked more to the artery dissections. Although the first one i hadnt trapped any blood flow, unlike maybe the leg one, so not sure. Eitherway i feel for anyone suffering from it as its not nice and i hope that maybe it will go away in time. I dont drive but if i did or had a job where i was operating machinery or had to be alert i feel this symptom could really hinder your life as when it comes on you have no control and feel so weak, it doesnt go away quickly when it kicks in. You have to wait as the adrenalin just keeps going and going – if anyone has any tips as to how best handle this when its happening id be grateful to know. So far i just have to stand up, lying down makes it feel worse, stand for about 5-10 mins and suffer it – then sit down but upright only. Other than that ive no other clues what to do. Thanks to anyone reading and wish you all well in your endeavours too – together we can help share support and information that may help us all equally with our pathway to good health again

          1. Hey Liz, Thanks so much for the rebuke.

            Once home following my stroke, I had outbursts of frustration because of my suddenly altered life and unknown future. My husband pointed out that if I didn’t stay calm and deal with my new circumstances that I was putting myself at risk for another episode. In the 3 years since, I have been able to do that, but as you pointed out, this control is not always possible. Since you have convinced me that I “don’t have a clue” I will refrain from commenting in the future. All the best to you and everyone in your recoveries.

          2. Mary,
            I wanted to thank you for reaching out to me not too long ago in response to my initial post here on the recovery forum. I very much appreciated getting your email, and it helped me tremendously when I was going through the initial panic and fear/anxieties over what had just happened. Thank you so much. I’ve read your posts and replies to folks on here that are seeking a light in the storm or just a shoulder to ‘lean’ on, because this is and can be such a terrifying experience. You’ve helped many people including myself to be brave and see things through. And reading your response in regards to ‘controlling’ residual emotions or anger/frustrations/outbursts, most of us knew that there was no malice in your comment or suggestions- a person wrote in with what looked to be a post seeking advice from fellow VAD sufferers- it’s obvious that your reply was meant to be of help not harm. We all have felt these emotions at times, and it IS very difficult to harness the negativity and redirect thoughts when as you stated, you’re suddenly thrown off kilter and life is upside down, but, Liz, if you Are of sound mind at this time, are able to write a foot long blog detailing your experiences, share your story, properly punctuate, use sarcasm within context, Carry on conversation, you Are able to control things to an extent.. that is just common sense. Anger sucks, I feel your pain Liz.. I really do and I understand every bit of it. I’m there too. But if it feels as though it’s something that is completely uncontrollable at times, that would be something to discuss with your specialist. I have had complete breakdowns at times, cried hysterically over simply not being able to turn my head the same anymore, or run around like crazy with my children, my memory not being quite as sharp, my left buttcheek is still numb, months later(lol), I still have moderate whiplash just from the chiropractic adjustment, I even have a vertebral artery loop now that is causing Bowhunters Syndrome after the fact- it’s aggravating- but I too have had to sit down and think hard about the situation, and remind myself that the stress alone will cause me more harm than healing, and remind myself to be thankful that Hey, I may be limited right now, but man, I still get to take a breath and know I’m alive, I get to go on loving my beautiful babies, see them growing, see the sunshine and feel it on my skin(aside from my cheek..).
            Tragedy befalls Everyone, no one is exempt from pain or heartache, it doesn’t matter how much we love or how good we are, everyone dies at some point- some happen to go sooner than others and often in ways that just downright suck or in hindsight we’re totally preventable. We forget about that in the midst of everyday life. How fragile life is and that we’re not invincible. But hey, we’ve got to do what we can to enjoy the time and life that we do have. Some people can’t walk, some people can’t talk, or are born and live for moments or only a matter of months before an illness or something takes them away from life. Some are confined to a wheelchair in an instant or become a vegetable and on a feeding tube for the rest of their lives. This is a harsh reality to realize. Some have no choice but to accept their new circumstances and make the most of them. And Some are lucky enough to only complain about their love handles or an order at a restaurant coming out to the table cold; and it’s easy to fall into the ‘why me?’ State of mind about things. But, truth is, things just happen. And if you’re lucky enough that life goes on for you, I’d channel that energy into being thankful for it. And seeing what could be done about the anger. Therapy, counseling, or even talking to any of us about it.. if you don’t come along with a crappy attitude or a damning disposition, or argumentative, I am sure most will hear you out and try to help. But Mary has been here on this forum for awhile, is a Very kind & considerate person, and she did not deserve the hurtful remarks one bit. What she does deserve is an apology in my opinion.
            I’m not here to get into a web argument, not meaning any of this harshly. I’m simply here to converse with other survivors, to share stories, hopes, positive thoughts, encouragement and advice to aid in a faster recovery physically and emotionally. If this recovery forum is becoming more of a place where people are venting in duplicates, multiples, or just bashing other survivors, I’d rather communicate via email with those that are here to heal. Thank you and speedy recovery to you all!

          3. Samantha, Far beyond the reason you wrote your letter (thank you, by the way) your thoughts on the way life happens and how we respond to those events is worthy of being printed and framed.
            Your words are a gift to us all as we cope with our disabilities…and to our families and friends who see us struggle with our new reality. You remind us of what we still have: the ability to love and the healing warmth and beauty of nature. “Suitable for framing” are your wise words…and that’s what I shall do!

          4. Mary, please don’t go…. your are so kind, thoughtful, and gentle natured. I always read your posts and they make me smile:)

        3. Understandable to a degree. Letting emotions out is beneficial for sure. But angry uncontrollable outbursts are more indicative of a type of damage or an imbalance and would generally need to be assessed if they’re getting out of hand. It is easier said than done to control emotions. But if one simply Can Not control them, and have realized at least that, then they know they need to see either find a way to get a handle on things, or see someone about it if they expect to get better. That is what Mary meant by her statement. Sure, self Expression is healthy, but to the point that it causes outbursts, raises BP and strains your damaged vessels, like I said before it is common sense that there’s a tier effect. She was trying to be of help and the way that people take things these days, it’s like we all have to walk on eggshells anymore when we say anything because of the way someone may misread or misinterpret, or risk the keyboard wrath of someone reading things while in a bad mood. Try to be more objective when engaged in a text or internet conversation folks.. try to picture the person talking to you and recognize what they mean by what they say. Don’t be so quick to jump the gun and flip out. There are usually two ways to take one comment…

      3. Find your attitude Mary shocking – ”she can no longer have the luxury of little temper tantrums. Adopting a calm and peaceful attitude is part of her recovery”. Sorry mood swings and agitation / temper are NOT controllable, A stroke is a form of brain injury and these symptoms are not something anyone can have any control over. Far too cold words for a poor woman who probably doesnt resemble her own personality thanks to a stroke. I have been there and worn the T shirt, awful feelings of agitation and mood swings, quick to flare temper was NOTHING i could control and im a usuallly very calm person who isnt into mediation. A chiropractor caused my VAD and carotoid artery, neck and sinus tears thanks to the dangerous practice that should be banned. I was a fit and healthy person prior who went in for a muscle strain, didnt even need my neck doing, but he did and that double twist was the worst mistake of my life. Had two strokes thereafter, one 2 weeks later, one 3 weeks on – and you have no control at all with your emotions if your cerebellum is damaged. Please have way more respect than to post referring to people having ‘temper tantrums’ – go and work in a sroke / brain injury unit and understand these people like myself want to be better and free from mood changes but its neurological and any sufferers will understand ‘you feel’ it going on in your brain, and back of the head with me, often with other unpleasant symptoms. This isnt psycho somatic nor a tantrum, this is a frightening real change of the brain effecting these mood swings and feelings. Until full recovery may prove these effects residual or improved – note some sufferers due to the damage wont improve 100% their emotional and the nervous system will always be somewhat impaired, decorum with statements like that need to be had. I would also warn of doctors saying go back to normal activity after 6 weeks, 3 months and anyone on here saying they made a full recovery they are very lucky and God bless you. I am guessing they just had a VAD and no major strokes attached to it. Its the strokes that cause the damage, a VAD with no stroke and its heals has a much better chance of full recovery. I was told by numerous doctors act normal after 6 weeks to 2 months ….bad advice it caused a second stroke. My honest advice is complete rest if you can – trying to get back to work isnt worth the risk of a second stroke which can cause more damage. I also found, but not sure if anyone else did, sleeping on my side caused more damage. so as uncomfortable as it is id probably recommend someone to sleep on their back for at least the first 3 months. I started to sleep also on my side alittle after the first 2 months and would wake up with awful headaches and always felt a weird pins and needles feeling on the side i lay on and pressure in the head. This was only after the VAD, before id no health issues except muscle aches – hence the deadly trip to a chiro. I also think sleeping that way added to the second stroke as it was putting an unnatural pressure on the brain and blood flow – fine when were healthy – when you have a VAD i think its not good to sleep that way until maybe 6 months in or you genuinely are sure youre ok and fully well if had no stroke. I had only slept on my side for about 3 weeks and was waking up not feeling great with these headaches and pain where the artery dissection sites were, wheras if i slept on my back id no pain. Could be another tip id give people, blood can flow properly if on your back at night so aids the healing process maybe and takes pressure off the arteries and cerebellum / brain. I now will only be sleeping on my back until at least 6 months as im only 3 months in, wishing everyone the best of luck with their recovery.

        1. Misprint – had first stroke 2 weeks in and then second 3 months on – this is my warning do not listen to doctors who say thats ok get cracking with life, i did after 2 months thinking yeah im feeling bit better and the second stroke i honestly believe was caused by not letting my body rest and foolishly getting on with life. Aswell as my sleeping on my side which i genuinely do think added to the second stroke. If any of my words can help someone else avoid a second stroke or aid recovery then thats what this forum is here for. Totally can relate to TIm about the stabbing pain behind the eye, I also had Horners syndrome on my left eye as a result of the VAD and chiro neck twist. This left me with an eye that feels sore at times, stabbing nerve pain like a weird shooting pain behind the eye and muscle ache around the eye. My eyeball actually was slightly more protruded and cornea exposed more the first few weeks. This has slowly recovered and gone back to normal. id never ever recommend anyone to see a chiropractor nor osteopath as any neck twist to me should be banned, far far too much risk which they dont tell you. Even if youre one in 50,000 or whatever they say and i think the numbers are higher, too many people covering stuff up about them…thats one too many for me. Its linked to your brain stem the neck, dont mess about with that stuff. Id never let any member of my family ever visit a chiro, other alternatives such as gentle physio etc. Id be wary even people that go to chiros and say i dont let them touch my neck but my backs ok – not really as i also had them work on my back – your back is your spine, every major nerve pathway linked to it which affects so much, your central nervous system. I wouldnt let anyone mess with my back and spine pressing and cracking. They used that gun machine too on my spine which i found really messed up the nerves ….he really did a number on me so beware anyone, just say no to the chiros office plenty of other safer places to go. As they dont care when it goes wrong, deny and cant help you – they arent trained doctors – i was in a&e three days later. Anyone messing with brain stems, vascular, nerve pathology – yet has no training on these areas should be banned. They work on manipulation of bones – but if they knew about the other areas on depth which is impossible they arent trained in them – theyd sure not feel twisting someones neck to adjust at c1 atlas – right next to the skull and brainstem – is a good idea ‘incase’ it goes wrong – and whats wrong, for me i think just doing that anyway on anyone holds massive risk. I remember saying to my parents what happened and they said in the army in the old days they’d teach you to kill a man by twisting his neck. That says it all….if someone in the street walked up to you and twisted your neck with force twice, youd not offer yourself up for it. Dont make the mistake i made, i regret every moment walking in that office happy, great day ahead, slight shoulder ache…ended up nearly fighting for my life hours later….and i am only 39, fit and healthy female with no health issues at all.

    2. For me, the neck and head pain went away after 6 weeks. Now, I’m 4.5 months out and occasionally get a stabbing pain in the corner of my left eye. I think it’s related to the healing process, so I welcome it. These pains are much less frequent.

    3. Hi Julie, I had daily migraines in the beginning for a few weeks pretty nonstop. I got on a daily migraine medication and it took care of that. She should discuss chronic migraine medication with her doctor for the short /long term. I also benefited by lots of sleep during those early weeks.

    4. I am looking for support groups for this. My wife is close to 2 weeks out. We are both fearful of the future. We are hoping to be hear from others about their symptoms and recovery.

      1. I had a migraine for two months after my dissection, exhausted from lack of sleep, severe neck pain. I got very stiff bc of guarding of my head. ..lots of stiffness I had to work out with stretching, careful massage, etc. I think it was about 6 months after dissection that I started that bc I was so fearful. This causes lots of anxiety, knowing you could have a stroke is scary. Expect an emotional roller coaster for a while… I got depressed, gained weight from inactivity, and was in so much pain for a while. Almost 2 years out and I still have migraines occasionally that last for days at a time..be encouraging but be patient with her and let her
        recover at her own pace..I thank god everyday that I have the most supportive boyfriend that was so helpful during my recovery…. he didn’t want me just laying around so he would plan short activities or outings to help me along but knew when I just needed time to lay in bed with a bag of frozen peas on my head. Even tho I’m still having symptoms, they are manageable and I’m back to gym, boating, paddleboarding, school, and working full time as a nurse..and just living life. In addition to my meds,started taking a collagen powder called Great Lakes everyday to help strengthen up my blood vessel walls.. that is something I decided to do on my own. Take care and it will get better…it just takes time and it seems everyone’s timeframe is different to full recovery

        1. Thanks friend, I am also a nurse. Your advice is sound. It is comforting to know that you are active again. I have had difficulty finding posts/sites on the internet about positive outcomes after VAD. This is something that is essential to those that are in the the acute phase of the stroke to help with their recovery. Again, glad you are doing well.

          1. 4mos after my stroke and arms still get so numb and painful when trying to sleep.last night legs were kind of shaky to im at a loss. .My circulation might be getting worse so i get up and walk a little.
            ANYONE ELSE HAVE A NUMBNESS AND A LITTLE DIZZINESS?
            REGARDS GINA

      2. WHO KNEW ? its a lot of things with our bodies caused by having a stoke WHO KNEW? NOW MY NERVES ARE CAUSING ME NUMBNESS AND GRIEF. Anyone wake up with body numbness ?
        Regards Gina
        oh no another duplicate !

  5. I suffered from a stroke after VAD on the left side. I was in the ICU for 6 days with close monitoring. Finally after 1 year of being on warfarin, my MRI results showed that my artery was now normal and I can get off my medication. however, I still feel tingling (pins and needles) on my left arm and leg. Not sure if that’s normal and will be chronic. Did anyone experience this symptom. I emailed my doctor but no reply yet. I’m very glad to be off from warfarin though. best of luck to everyone, hope you all recover soon.

    1. You asked about the tingling post stroke. My right side developed the symptoms similar to what you describe. They worsened after a year post stroke and now is very debilitating especially when weather is bad. Here is what you may, or may not, be dealing with (from the NIH website) “Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson’s disease. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.” This is what I seem to have, although the medical profession isn’t very helpful in dealing with it. There are no drugs that touch it but I have found that heat and also aspercreme with Lidocaine is helpful sometimes. It isn’t fatal, it is just painful. There are a couple of drugs in the pipeline, not yet in trial, which are aimed at this kind of pain, so take heart that help for this kind of strange pain is on its way. I take nothing for it because nothing worked. The ones prescribed like Lyrica did not touch it. Great you are healed up and off coumadin! Keep up the good work and don’t worry about the tingling.

    2. I am a 42yo female, 4 weeks ago I suffered a stroke to the Cerrabellum caused by a LHS VAD.
      I too have the dizziness, anxiety with panic attacks these come mainly from the pain I am still experiencing on the LHS of my neck, The pain varies from an ache to a sharp searing pain.
      My question is did others experience this pain and how long will it take to go?

      1. Hello- I had to reach out and reply to you because I was diagnosed with a right VAD after chiropractic manipulation 4 weeks ago. I have had several followup imaging throughout the past couple of weeks because I too, experience the shooting, searing pains, aches and tingling at the site of my VAD and always fear the worst when I feel ANY sensations after this diagnosis. Fortunately all imaging looks ok, the artery is getting better flow than it was initially, things look to be improving despite the pains. And my neurointerventionalist says it is very common to have these healing pains. It is easier said than done but I am told to not worry unless I start to have neurological issues as well, to know that this is mostly a musculoskeletal/nerve feeling with some ‘guarding’ being done by the muscles during the healing process. I know how deeply and drastically this condition affects a person and would be happy to share experiences and be someone to talk to while going through this, maybe sharing what our doctors have to say/advise as there is simply Not enough information out here on the web sadly. Feel free to email me at Samanthajohnson815@gmail.com. And hopes that you experience a speedy recovery and no more aches and pains! Take care 🙂

        1. I too am a 45 yo nurse. I was diagnosed on July 4 with VAD after chiropractor manipulation. Luckily a heads up PA in the ER recognized my headache symptoms and history to order the right tests prior to having a stroke. On coumadin and waiting to heal. I still suffer daily headache and neck pain on the affected side. What if any medications have other found that may help? This seems to be the only symprom the doctors aren’t concerned about but it is severely effecting my quality of life and ability to get back to work and focus.

        2. so sad to hear of so many having VAD after a chiro trip, this was my case too as my previous posts share. These people should be banned, as the outcome of them can be death – or what we are experiencing…and a further stroke can still cause bad outcomes if we dont take it easy. Honestly shocked to hear how many are chiro VADs and the medical professional just looked over it and didnt seem phased. never would i recommend anyone to visit one in my lifetime and i learnt a very hard lesson. As we all have who have now potentially life long issues thanks to a 2 minute crack in the neck twice either side – my chiro said enjoy the healing journey! yes sure thing pal! god bless you all

      2. I did experience that type of pain and sensation. Mine lasted about six months. Then came and went over the following year. My VAD took 17 months to completely heal. Dr said it was normal and a great deal caused by my guarding. I am just shy of three years from my VAD and left side strokes. I finally feel better with continuing work on my shoulders and neck to strengthen muscle and decrease guarding.

    3. HAD A VAD MARCH 12,1017 SO DIFFICULT TO FIND A DECENT NEUROLOGIST MINE CALL A SLEEPING DISORDER PROGRAM, I FIRED HER . AMAZING SHE CONNECTED ME TO THE MEDICAL EXA,MINER BUT IM STILL ALIVE.
      THIS IS NOT A DUPLICATE PLEASE POST

      1. Hi Gina,

        I have hidden the other two identical posts and kept this one shown and available to all.

        Thank you!
        Robert

  6. I experienced a dissection in 2011 and have been doing ok until recently I took a new job requiring a lot of writing and research related work. I have found that my ability to write and communicate has been effected. Is this common? What is the long term effects of a bilateral dissection?

    1. I am a 43 yo female. I had my first VAD on the right side in 2009, 2 weeks after having an ectopic pregnancy. I was hospitalized and put on Coumadin and gave myself Lovenox injections for 2 months. Within the last 7 years I have had at least 5 more VAD’s on the right and left side. But by the grace of God I never suffered a stroke from any of them. I was just left with horrific pain in the right side of my neck and head. I have nerve injections at least once a month for relief of pain. My quality of life has been miserable. I have managed to maintain my job and family life but only by prayer. For the last 8 years I have been sent to every neurologist and vascular doctor in my own city as well as 300 miles away from home. Just last week I went to see a new neurovascular surgeon that just moved to our city. I finally after 8 years have found a doctor that could explain to me what is going on in my body. I have been diagnosed with Fibromuscular Dysplasia and he believes that I have some type of autoimmune disease that is the cause of the FD. I have had more VAD’s on the right side than the left. To the point that my right vertebral artery is completed diseased and is not circulating any blood to my brain. It is merely circulating blood into the tiny arteries that supply the muscle fibers. That is were all of the right sided pain is coming from. The left vertebral artery is now my dominant artery but is diseased and scarred from the prior VAD’s. I have been sent to a rheumatologist first to get testing for autoimmune disease before the doctor will do a cerebral arteriogram to see what can be done to help open the path for circulation in the left artery. I am soooo happy to have finally found someone that actually has an explanation of why my pain and suffering has been so incredibly bad but at the same time I am soooo scared. I hope that this helps anyone out there that is having the same issues as myself. If you have seen multiple doctors with no answers please look into the Fibromuscular Dysplasia and autoimmune route. This might just be what is going on with you.

  7. Wow. Like many others I find this website full of personal experiences and it does set my mind at ease a little. I had my VAD 2 1/2 weeks ago After chiropractic adjustment. I’m a 28 yr old female. After experiencing migraine like symptoms and a stiff neck for two days, a very knowledgeable doctor in the ED found both of my vertebral arteries have been dissected and are narrowed by 90% . Shockingly I didn’t have a stroke. I was admitted to the ICU for four days and then into the neurosciences department of the hospital there after. I like many of you have described, I’m terrified. The pain and/or dull headaches that seem constant, send me into a panic and frenzy almost every night. I am on Coumadin and recently was able to stop giving myself the Lovenox injections. Now that my blood is ” therapeutic”. I was told by my Doctor Who discharged me I could resume to “normal activity”. I went back home to picking up my two-year-old and almost 1-year-old, cleaning the house etc. and then wound up back in the emergency department with sharp searing pains on my right side of my head. Since then I have not been lifting our children very often. I’m lucky to have the help of my family members. I would happily take any and all advice. I guess the pain does really, when I think about it too much or seems to be in the evening/night time. Is this normal ? The mild dizziness? Will it ever go away or get better? I don’t have another CT scheduled for six months. Blessings and positive vibes to you all!!

    1. My headaches and facial pain resolved after about 3-4 weeks. I had a left vad with a brainstem stroke. I am 3.5 mos out and have regained most everything. I still have bouts of dizziness and nystagmus related to my vestibular tract getting fried but with rehab, those are greatly improved. I went back to work part time at day 90 and resumed Crossfit the same day. I approach CF with caution, however. If you have any dizziness, I’d highly recommend a referral to ENT to get set up with a vestibular therapist. I think your pain episodes will resolve. Big thing is to remain patient and remember that even a bad sprained ankle can take much months to heal. You’re young, your body can still take a joke. You will heal. Good luck.

    2. Hi, your story mirrors mine! Though I’m 29. But I know exactly what you’re feeling, I am 4 weeks into life after diagnosis. Fortunately I did not suffer a stroke either, but I do have all of the symptoms you describe and my imaging was identical for three weeks, and surprisingly showed a slight improvement this last week, although the pains have remained throughout the ‘healing’ process. Hopefully this reply is helpful somehow in that aspect. My Neuro Doc says the pain is normal and the healing hurts sometimes, to start to resume normal life but at a gradual pace. I’m still scared to move at times, and my neck is stiff from being so rigid after getting the news at the ER. I thought every movement would exacerbate the problem..but I guess they’re rugged little arteries and can handle some movement while they work on healing. One thing I wanted to know is- do you have any cracking or crunching or popping in the neck after the adjustment? That is probably my biggest fear at this point, the sounds my back and neck make after the chiropractor. I Never had such a ‘rice Krispy’ sounding spine until the adjustment(my first and last adjustment!) and anytime I hear myself pop I worry that a bone is hitting my artery, and the artery is being snapped like a rubber band or something and that it’s getting further damaged somehow ☹️ It’s just not a comforting sound when in motion, gives me an instant panic attack! I sit there and wait for the worst.

      1. HI Samantha- I too get the rice crispy crackles in my neck every time I turn it, especially in the night when I roll over. Never had it pre-dissection.

        1. Hi Leah, (that’s my daughter’s name. 😉 )
          The sounds are such odd and uncomfortable sensations for sure. Sometimes it feels as though when my neck ‘crunches’ upon movement, something hits a nerve and sends tingly prickly sensations down my arms into my fingers, or hot flash feelings around my head. Does that ever happen to you? Do you have a dissection that is still in the healing process? If so, how long has it been since your diagnosis? Did it heal completely, occlude, heal with scarring, require surgery, ..? What caused yours? Do you recall what restrictions you were given upon discharge from a hospital? Is there a general healing ‘time’ for these? It is so difficult to find information about this anywhere online. It’s a lonely position to be in for sure. Thank you for your reply to my post. I appreciate it 🙂 I hate knowing that anyone else has had to deal with this condition. I do not wish it on anyone..

          1. Hi there! These are all so crazy! I thought I was completely alone. I’m 29 years old and had two strokes one week apart from each other and had no idea that’s what was happening. The fiat time was early in the morning I woke up to feed my pups and I fell against the wall everything I touched was tingley and pins and needles my body went wet wet wet like I took a shower my neck started the throb and my head started to spin with vomiting. I stayed in bed for two days and took Advil thinking it was a fluke thing. It happened the same thing 10 times worst the following week and I went for the emergency room right away. They thought I had vertigo or crystals in my ears so I went to Boston and the MRI showed two small strokes with complete occlusion with the VAD. I’m about three weeks out from the hospital and no doctor wants to see me until two more months for another MRI. I’m so confused and lost. I’m a hairstylist and a workout nut. My life seems flipped upside down right now and I hate it. I same sometimes have panic attack like episodes and I get light headed and need to sit. It scares the bell out of me and I don’t know what to do besides take big breathes and try to sit and rest. My head throbs occasionally but almost everyday I have to take Advil for a headache. So I’m don’t know if it’s “healing” pains or what. I had to go right to the Obgyn to get off of birth control which apparently causes blood clots that also lead to strokes. So next week I have to go get an IUD. I just need some direction on what to do or not do, exercise? Etc…. anyone else feel a little lost or up in the air!

  8. Hi guys… Ds is sikander from india. I had VAD on January 22 2017 while playing cricket. I was bowling nd dn suddenly i feel d giddiness nd weakness on right side of my body. After MRI and CT ANGEO d doctors cnfrmed dt it ws VAD. After 2 mnths i go through CT ANGEO again nd d reports show my artery fully recovered. I am still on asprin , clopid and atorvas tabs. Sometimes i still feel little headache nd itz more like psychological now. Got more confident after reading ur stories. Can anyone plz suggest wt precautions i should take to go through d same again. Thank u

    1. Hi Sikander,

      Good to hear your artery has fully healed. Once that has happened, you should be back to normal, however, as you said, it might be all in your head now. I had my VAD Dec 2015 and my last MRI was Oct 2016 which should it was stable, still not completely healed yet. My headaches stopped around April 2016 but I still get a bit light headed from time to time, think this might be a mild panic attack or something. We have all been through a traumatic experience and not everyone comes out of it feeling chipper.
      Take it easy for a while but also think how lucky we are that we are still here to talk about it.
      Hope you get back to the cricket soon, my playing days are long behind me, but I still love the game.
      Take care,
      Rob

    2. You need to talk to your neurologist about this, I had a stoke back in Nov. I had a Vertebral Dissection and have had multiple ct and mris done. I am young(34 yrs of age) and after seeing my Neurologist on and off for 6 months we did a CTA and it came back with no significant signs of dissection, she gave me the clear to go back to work. ALL THOUGH I was put on light duty, I am an avid golfer and she told me that it was up to ME and how I felt to do these things. I haven’t been out yet, but I would go with what the doctor “orders

  9. Hi everyone it has been really therapeutic hearing success stories from people who have experienced VAD.

    As a 33 y/o ED Doctor I suddenly developed vertigo after my night shifts a week ago followed by mild occipital headaches, and have only recently been diagnosed with left VAD with left cerebellar infarct. I have never been unwell and done everything possible to live a “healthy” lifestyle.

    Touch wood I have made a good neurological recovery, but still awaiting further tests as the scans are inconclusive for VAD and they are worried about other vascular anomalies.

    I refuse to play the victim and I deliberately tell myself that pre-CT era I would have been diagnosed with stress induced chronic migraines (which I stupidly diagnosed myself with 3 days prior to seeking medical advice). For that reason is warms me to know that people have successfully gone on to live normal, active lives and not felt limited in their life choices.

    Thank you everyone for sharing these stories. It has made me a lot more philosophical about recent events and it is so nice to feel like I am not alone.

    1. Hi Ryan! Welcome to the club! Life does march on and the terror does subside as the years go forward. I had a VAD and a Carotid dissection almost 2 years ago when doing a spin class and am much improved. Whenever I start to worry, I say to myself ” Yes, these bad things can happen, BUT NOT TODAY”. It seems to refocus me on the good stuff. Speaking of good stuff, how wonderful that you are a ED doctor! You can share your personal knowledge about dissections with your staff and patients and look for this when people present with these symptoms. I was diagnosed within 5 minutes in the ED at a small coastal hospital by a PA and I will forever be thankful for him. I just presented as a migraine sufferer with neck pain and a tiny bit of numbness on the top of my head. He saved my life with his knowledge of a rare condition. But back to you; you will heal and from time to time you will have weird symptoms that will cause distress but you will go on to live a healthy life because if you look at the literature it clearly states that there is an excellent prognosis for VAD if you make it through the initial event. Good luck and God bless!

    2. Also a doc here. FP in Chicago. Had a R VAD after scuba diving and diagnosed myself with panic attacks. Had intermittent TIAs which caused “panick” and a normal MRI. Ultimately had a mild R meduallry CVA about 2 weeks ago and I am now recovering nicely with some PT/OT. Take care of yourself. One day at a time.

      1. My husband is an Internal Medicine physician and it took us a week to figure out what happened to me. I’ve just never had health issues and was training for a half marathon in a few weeks. There was an astute Radiologist on call the night I went to ED that happened to notice the dissection. They had ordered a scan of my neck thinking perhaps a soft tissue injury, swollen glands, etc. After the initial scan, they did a more detailed one which clearly showed the amount of stenosis.
        I feel truly lucky to be alive and my 6 month scan showed no signs of dissection. At the 7 month mark, my headaches are gone completely. Best wishes and a speedy recovery to everyone who has endured this bump in the road.

      2. OLIVER,
        HI KERYN,
        HAD A STROKE MARCH 12,2O17, nd after 4 months still have left side arm and leg numbness,very unbalanced when waling and doing steps and pain in my body everynite i try to sleep wakes me up and i take a walk. hope this all gets well for me, you, and everyone who suffers from this condition, had a vad stroke march 12,2017 good luck and best wishes.
        GINA

    3. Hi, I had a VAD 10 days ago. I’m amazed by all the comments on here and glad to see people doing so well.
      The 10-11 days leading up to my stroke I had a headache at the back/bottom of my head, the day before my stroke I had 4-5 dizzy spells. I went to the doctors the next day and was told that I was fine, I left with stronger pain killers. Approximately 15 minutes after leaving the Doc’s I had my stroke. My right side went to jelly, it seemed like a curtain was pulled across my right eye and I couldn’t talk properly. I managed to lean on something to hold me up. This lasted for about 10 – 15 minutes. I went home and went to bed, I woke about half an hour later with my right side being totally numb. This lasted for about 10 minutes. I sought medical advice and was sent to the stroke clinic the following day. An MRI confirmed a VAD on my left side. I’ve been so lucky that I can still walk and talk.
      I’ve been put on blood thinners, beta blockers and pain killers. I feel as though the Doc’s have decided that I’m ok and have sent me on my way. They said they would see me again in 2 months. In the mean time, I have no idea of what I should or shouldn’t be doing. Am I allowed to exercise? I’m assuming roller coasters are out of the question? Will I be on blood thinners for the rest of my life? How long do the headaches and dizzy spells last for? Any information would be great. Thank you.

      1. It sounds like you are doing well after it, I was on proper blood thinners for 6 month and then aspirin for all of my life, light exercise won’t do any harm but I would build it up not go to the hard stuff straight away. I haven’t been on a rollercoaster since last year I darent do it. I was looking everywhere to see if I could drink alcohol and fly when I had my VAD. My doctor told me I can drink within reason not to go on the lash and I could fly in the September when I had the VAD in June, I suppose it’s different for everyone , I hope you recover well x

      2. Hi Elaine, I sure do remember being in your same position. Scared. Terrified to move. Terrified to sleep, breathe, etc..
        It gets easier. Don’t exercise ( except for walking) until you have gone back and the dissection has healed/stabilized. Don’t lift anything heavy. Eat well, rest, spend some time outside in the sunlight and take time off work while you recover. The fear will always be there but it does shrink with time. It sounds like you are already healing nicely, keep up the good work! Hugs, leah

        1. Thank you so much for your comments. I had a headache for 6 days when I decided it was nothing like my usual migraines and to get it.checked. I am a 49yo female and presented at hospital with blood pressure 213/150. After many days and tests I.Was sent home on aspirin and blood pressure tablets with a diagnosis of dissection to both vertebral arteries and one carotid artery on the right. I still have crazy spasms through my neck and a headache if I move the wrong way. My head feels pressure when I stand up for too long and doesn’t like to support itself. I have been terrified by this pain but potentially it is nerves around the blood vessels that have been affected also. I would love to hear from anyone else who still has pain and how long it took to subside. I have been diagnosed with fmd. Very appreciative and encouraged by you all sharing your stories.

          1. I, too, have FMD. It never showed up clearly on any MRA scans and I had many. But it was clear as day on a CT scan. Anyone who is a female ( 90% are female) who has had a dissection should consider going to an FMD clinic and getting all arteries tested for this disorder. Its manageable and you can live a healthy life but you need regular follow-up to prevent complications. I went to Dr. Jeffery Olin @ mount Sinai in NYC and couldn’t have been happier with the level of experience, care, and follow up from him and his staff. Cleveland clinic is another amazing one.

        2. Leah, you mentioned Cleveland Clinic. Who would you recommend there for evaluation of my post stroke after affects? (I seem to be in that 10% or so strake survivors who develop neuropathy-type pain, numbness etc.) I haven’t been able to identify the stroke expertise I know is there and would appreciate the recommendation. My stroke occurred 2 1/2 years ago.

          1. Hi Mary! Hope your doing well. Are you still on the lyrica? Did that work at all for the nerve pain? I get pain/numbness/ tingling on the left side of my face that still comes and goes about 1 1/2 yrs. post dissection still. Scary and annoying. I haven’t been to the Cleveland Clinic, but its spoken of so highly on the FMD Blogs. Dr. Heather Gornick is an FMD expert there. I would follow up with her; I just read online in one of her chats that she follows people with dissections even if they don’t have FMD. And if you haven’t been screened for FMD from head to pelvic- you can have that done with her too. I’m not sure if she would specialize in post stroke symptoms ( seems like most dr. just don’t know much about that) but its worth a shot and if she personally doesn’t handle that she can probably recommend a great doctor who does. Wishing you much success and less pain 🙂

          2. Leah, thank you for the recommendation at Cleveland Clinic. I will follow up on it.

            The facial nerve damage I have is on my right side. It really is bothersome when I have dental work done and seems to get worse over time. Doctors don’t even venture a guess about it; they just ignore it. I have been amazed at how much medical ignorance there is in the profession about strokes. I feel on my own and as if I have to be my own doctor. Look up something called “Trigeminal neuralgia” and see if that fits your symptoms. The Internet says that Mayo Clinic specializes in the treatment of it. It came on as a result of the stroke but not immediately following it. In fact, my right side developed a neuropathy-type of response about a year after my stroke. I think it is classified as Central Regional Post Stroke Syndrome. It comes weeks, months, or even a year after the event. Mine came about a year after. My neurologist confirmed that about 10% of stroke patients get it. Not much helps it. I no longer take Lyrica. It didn’t help. None of those psycho drugs are any help to me. They just make be sleepy and difficult to think, and I need to be able to think. There are a couple of drugs in the pipeline that takes aim at the post stroke pain mechanism. One of them is being developed at Cleveland Clinic, so I am hopeful that eventually it will be licked. Odd as it sounds, weather and temperature affect me greatly.

    4. Hey I’m 34 and also had a VAD at age 32 which resulted in a cerebellar infarct. Acute symptoms were vertigo, uncontrollable vomiting, loss of vision and hearing on left side. Total recover after 4 months. My question is my neurologist and my vascular doctor have both cleared me to scuba dive but I’m still leary. It’s been almost 3 years since the VAD. What do you guys think?

      1. Thanks for chiming in here, Chris. Your symptoms sound like they were pretty scary, but I’m so glad you’ve recovered fully (and it’s been a couple of years). It’s tough to tell you to ignore your gut/heart on whether or not to scuba dive again. I’d say if your doctors think it’s OK, it probably is! That said, maybe you can start back slowly, like not diving deep, staying under too long, or ascending quickly. Perhaps a conservative approach to diving again would help ease your concerns.

      2. Salut. Mă numesc Anca și sunt din România. Am suferit și eu în ianuarie de disectie de artera vertebrala drapta și mă confrunt în urma ei cu dezechilibre, dosimetrii interne fata și ochi nevizibile, și cel mai rău surditate ureche stanga. Cris, poți sa- mi spui ce medicamente ai luat de ti-ai revenit inclusiv auzul în 4 luni. Multă sănătate și multumesc ca împărtășiți experiențele voastre aici, îmi da acum după 4 luni mai mult curaj, cei din România nu prea sunt pozitivi…Mulțumesc.

    5. Hey. 45 yo ED doc s/p vad with Wallenberg and horners on 2/1/17 (after an overnight!). Now 4/18. Doing well. Most limiting residual is nystagmus and a vertiginous sensation. Any advice on how long the visual processing issues lasted for you, if you had them? Thanks. Tim

    6. HI OLIVER ,
      YOU SOUND GREAT WISH I WAS ALSO. HAD MY VAD IN MARCH ,GETTING HEADACHES DIZZY WHEN WALKING UP AND DOWN STAIRS NUMBNESS WHEN SLEEPING; ON ASPIRIN AND PLAVIX,HANGING IN THERE HOPE THIS ALL GOES AWAY SOON ,I’M IN MY 60’S TOO.
      “GOD BLESS US ALL” AND YOUR MOM TOO
      WOULD REALLY LOVE A GOOD NEUROLOGIST MINE THINKS STROKE IS A SLEEPING DISORDER. GO FIGURE LOL

    7. I am a cardiologist and was just diagnosed with same. I totally agree with you…….. what a very scary experience for me!!!!!!

  10. I am 26 years old and I suffered a stroke due to dissection of my left vertebral artery. The stroke affected my left cerebellum so I’ve had a lot of trouble with my vestibular system. I have regained a lot of my balance and have returned to some normal activities. Does the dizziness & light headedness ever go away ? I also experience extreme vertigo whenever I lay flat on my back. Any tips / advice ?

    1. I am 47 and had a spontaneous dissection in my right carotid artery 7 months ago. I am happy to say that my head and neck aches are almost non-existent now. It took almost 4 months before I saw much progress and I also was diagnosed with new Vertigo at about month 3. It only lasted a month then one day just vanished as quickly as the onset had happened. I found that sleeping on my side for a few hours at night really helped. There is also a type of physical therapy for Vertigo but was not recommended for me due to the dissection. Therapy involves manipulation of the head/neck to get the inner ear corrected.
      The recovery takes time and patience. Just try to relax and don’t be too hard on yourself. Good luck in your recovery!

      1. MOST DRS WAIT MONTHS BEFORE THEY SEE YOU TRY GOING TO YOUR PRIMARY CARE MAYBE HE OR SHE DAN HELP GUIDE YOU .THERES A LOT OF PAIN AND THINGS RELATED TO VAD AND OR STROKE WE DON’T UNDERSTAND. I CAN RELATE TO YOUR ISSUES VERY WELL FEEL BETTER RELAX AND SEE YOUR PRIMARY CARE IF YOU NEED HELP OR AN E R

    2. Hiya, I was 21 when I suffered from a VAD i was completely spontaneous as I got it from blowing my nose! This was about 5 days when I started getting a headache and flu like syptoms and I rang the none emergency number, I was told it’s just a headache just get a hot water bottle. ( they didn’t suspect anything as I was only 21) I woke up about 3am with a weird feeling ( you know when you hang your body of the bed to get the control or something and your head does that fuzzy thing) it was like that but continuously. My eyes went back and I was throwing up. I eventually got to sleep took the next few days of work, I’m glad I did as about 5 days later I had I blew my nose and must of dislodged the tear. Going to a and e was a blur I don’t really remember having the stroke, even though I was conscious at the time. I just remember I couldn’t control my tongue and couldn’t breathe. It was too fast. I had a ct scan and you could see something there but it wasn’t that clear I had two mri scans after that. One with contrast. I went through about 5 days in hospital as I couldn’t walk or talk and it took me two people to go to the toilet. I got sent home in quite a bad state as my ward was full of loads of old biddys and they thought it would effect my mood drastically if I stayed. I’m glad I went home. I was downstairs in my parents house in a bed just waiting for my daily physo, I’m glad it was me and no one that I know as they don’t have the patience to do that. 3 months on and I could walk but only in my house and couldn’t really get up the stairs my speech was still slurred and I didn’t really have the motor skills to text or write. But the 4th month I could do a lot even get up the stairs.I was even planning on going back to work my right hand was still very unreliable I didn’t really trust it it’s only been 7 months now and I am a proud lefty as I don everything but write with it. At 7 months I still have to do two trips up the stairs with hot drinks. As I can’t balance with both hands full. It’s sad but I’m working on it I was back at work at 4 and a half months. I still now suffer with neck pain and head aches. Eventhough strokes you get fatigued, I get it when I’m doing something, but I have insomnia I can’t really sleep at night. I think it’s because I don’t want it to happen in my sleep ( even the doctor has said it’s healed up, I can’t stop thinking about it) I prefer to nap when I come home from work so I know someone is awake. I haven’t had a full nights sleep since I was very ill. I avoid to be on my own. I avoid me driving also as I don’t want it to happen then. I only sometimes get dizzy when I lay down, it’s generally when I wake up. Does anyone know if it’s a good idea to get your eyes tested? Also if anyone knows some sleep tricks I’m all ears. Please no tablets I’m on enough!

      – Kayl

      1. That is very similar to me. I was a little older ar 27. It’s now 10 months since the unfortunate event. Left vertebral artery dissection followed baby a stroke. Mine affected my left side so being right handed, it was not too bad. I’m like you still improving but balance of my affected hand is proving most difficult. I also need two trips with hot drinks. I can jog very slowly for a very short amount of time (about 10 seconds) but it all seems so awkward, like my right is fluent and I’m forcing my left. Is this the same for anyone else?

        1. Hi all,had a VAD March12,2017 I am in need of DR who is caring and qualified in this area ,I live in SUFFOLK COUNTY NY ,close to SMITHTOWN . MY NEUROOGIST appt, is in SEPT, I NEEDto be able to communicate with my DR I Have issues
          Good Luck to all…..Gina

      2. I also had sleep problems for the first six months. After my stroke I was a very light sleeper never going into a deep sleep. I felt like I never got a good nights rest even though I slept a lot. But it has been 13 months now and I am sleeping fine. It just takes time. God bless.

      3. I JUST GOT A GREAT EYE EXAMINE WON’T HURT ANYTHING BUT OPTHAMOLOGIST WONT FIX CATARACT TILL CLEARED BY NEURO DR .
        HAD TROUBLE WITH MY EYES AFTER STOKE BUT HAS NOTHING TO DO WITH CATARACT

      4. Alison hi,
        Yes I have pain everytime i lay down and try to sleep numbness, jooints tighten up .neck cracks.arms get numb and a shake them like all around then i get up and walk walk walk eat and eat some more every night for almost 5 months sos my doctor could care less so i go the the ER and they check my vitals and do blood work and tell me besides it all i probably have spinal stenosis nerve pain to tell my pcp to do back mris or neurologist wish it was that easy havent seen a neurologist since my stoke appt not till sept my neuro surgeon told me see you in a year, and my pcp tells me tell your neurologist , LORD HELP ALL OF US ! what a run around WOW.

    3. It does get better! I’m 2.5 years post left side VAD and multiple strokes in the cerebellum. I did a significant amount of vestibular therapy. Being in healthcare, I can’t say I was a proponent, but it changed by life. It taught me skills to use and progress back to my previous self. I still experienced vertigo when physical exhausted or suffering sinus issues. However, they are greatly diminished.

    4. My boyfriend had a dissection of the right vertebral artery on December 15th . He had 3 strokes affecting the cerebellum. He still has dizziness issues and vertigo decently bad still.

    5. Are you still on blood thinners? You should talk to your doctor about taking meclazine for the vertigo. Hopefully the vertigo will go away when the artery heals.

    6. I suffered a R VAD two years ago. For approximately one month after the VAD I had difficulty balancing while walking. Gradually these symptoms disappeared and within a short period I was back jogging and stil am at 68 years of age., I’m on warfarin for life and I feel fine and healthy. Incidentally , my mother was on warfarin for 35 years and lived to the age of 92

      1. It will improve! I’m 2.5 years post VAD with strokes in the cerebellum. It was very frustrating at times, but consistent exercises to retrain my vestibular system have been successful. Don’t be discouraged. It took longer than I wanted or expected, but it will get better.

          1. No one said anything about stairs, so up and down I went. Two years later it is easier now than then.

      2. OLIVER,
        GOD BLESS,SOUNDS ABSOULUTELY AMAZING WISHING I COULD HEAL AS WONDERFUL AS YOU AND YOUR MOM .
        WISH YOU THE VERY BEST ,TY FOR SHARING.
        GINA

    7. I as well had this but on the right side though, from what I have been told from my neurologist every person is different and how they heal and their body reacts to this. My side effects are that the left side of my body is extremely sensitive to heat and the right side of my body is sensitive to cold. Glad to see that you are a SURVIVOR just like me!!!

  11. Thanks for your response, it’s alway’s good to know you’re not alone. I’m now more than 2 years post incident. I’d say I’m 85-90% back with no opening of my left artery. It still takes me a few steps after sitting or lying down for awhile to get rid of the “funkiness”in walking. My right side initially had little sensation at all but the last 18 months or so has been returning too.

    1. Tom, You wrote ” It still takes me a few steps after sitting or lying down for awhile to get rid of the “funkiness”in walking. ” After two years from the event, I have the same sensations.

      1. Mary, it certainly(my funkiness) has improved over the 2 years but remains to a lesser degree. The positive is I’m still improving. My neurologist thru Mayo Clinic has really put very little restrictions on me from the onset. I swam 4-5 times a week and returned to that right away but boy was it different and now it’s like it was before. I went to Mexico at 5 months and getting into the ocean was really tough but a year later unbelievably better. Escalators was the same way, not totally back to normal but continuing to still improve!!!

        1. Who did you see at Mayo? My doctors are in the process of referring me there. I’m very curious to know if anyone has ever had to have there dissection fixed surgically? Also how big are most peoples dissection? I feel like everything has been speculation so far. Trying to de-code the information that each one of my doctor give has been frustrating. I am 31- I started having neck pain on my right side, nausea, head aches, and feeling off balance 3 weeks ago. Last Tuesday I finally went into the ER after i started having scalp sensitivity on just the right side of my head. After a CT they found that I had a VAD on my Right side. It starts around my collarbone and goes all the way up to the base of my brain. I also have a blood clotting disorder (von willebrand disease). But it’s considered a mild case. They deliberated for nearly 3 days before finally deciding it was safe for me to be on a baby aspirin in addition to a high dose of Lipitor. My symptoms became so intense that I was completely bed ridden for almost an entire week but I’m suddenly feeling pretty good! I have some random shooting pains in my neck and it still feels a little tight- and occasional unsteadiness and nausea but NOTHING compared to what I was feeling a few days ago! I was only diagnosed a week ago. I wonder what has changed? Surely the blood flow couldn’t have increased that fast?? I’m rambling on…sorry… it’s just so nice to read peoples personal experiences with this. I just really want to know how many have had to have surgery to fix the problem- and in general how big is the typical dissection?? And who you saw at Mayo?

        2. Hi Tom. I had a 5 month MRA that also confirmed my left VA is chronically occluded. Neuro says it’s ok (as my right was dominant) to go on with life with one VA and to stop Coumadin. Same advice given to you? Thanks

    2. Escalators. Who knew they could be so troubling? After 13 months post VAD I still feel discomfort when on an escalator. Other than never being able to get on a roller coaster again the escalator phenomenon still haunts me.

  12. I am thrilled to have found this website, since my neurologist has been less than helpful. I am 42, in good health and suffered a left side VAD in July 2016. I have since slowly improved. although my MRI shows the the artery on my left side is mostly occluded. In the last week or so, symptoms seemed to have reappeared. I have left side numbness, head pain and left side headache. I am wondering if anyone else has experienced recurring symptoms. We have had bad weather and I did a pretty big workout. Thoughts…I am worried. My neurologist was fairly flippant in her response but I don’t feel good and also have nausea.

    1. Disturbing symptoms come and go and scare the life out of you, but the more time that passes, the more they recede. My stroke experience was over 2 years ago, and I am almost twice your age.

      The truth is that most doctors don’t know much about stroke and that’s why you can’t find out much. Try to find somebody who specializes in stroke. You may have one that specializes in something else, yet still be a neurologist.

      One thing want to mention that might be helpful: You said the weather was bad where you are. That can affect the way you feel. Believe it or not, weather affects people who have had strokes. Notice how much better you feel when a “high” moves in and settles in your area. Imagine normalcy again and over time you will find it. Don’t get discouraged.

    2. Kerryn,
      A year and a half later I still get numbness and tingling in my face that randomly comes and goes- its worse when the weather changes and I overdo it with exercise and stress. I have a VAD unhealed and a carotid dissection that’s totally healed.Request another MRA and if everything is normal, its just overexertion. Its scary but it seems to be our bodies way of telling us to take it easy.

      1. HI THING IS A DISSECTION IS VERY DIFFICULT TO DIAGNOSE And see TIS WHAT NEURO SURGEONS SAY ANYWAY

        Hi all, We are all doing the best we can to recover have no fear just keep up a good positive fight for recovery. I’M SO HAPPY TODAY I WASHED THAT GRAY RIGHT OUT OF MY HAIR AND LOOK 30 YRS YOUNGER AND MY NECK WAS LIKE RICE KRISPIES.
        AND THIS IS NOT A REPEAT, OR DUPLICATE POST PLEASE POST IT THANK YOU GINA

        1. Hello Gina, I am 2 months out from my diagnosis and I Still have the rice crispier/pop rocks crunching sounds in my neck. It sounds to me like the ligaments trying to work themselves into a more relaxed state or it’s due to my not moving in that direction for quite awhile(I’ve been pretty stiff since my dissection, my chiro adjustment also left me with a little whiplash..) and there’s quite a bit of what I consider a ‘natural’ guarding our muscles do during the healing process so I feel it’s a normal albeit aggravating and sometimes frightening sensation. When I first heard and felt the crispies, I would cringe and fear the worst. Now I just try to take a few breaths and reassure myself it’s okay as long as no stroke symptoms or pains follow the sounds. Try not to worry, our bodies are designed to heal themselves and this will get better with time. I also have to remind myself of this but making it through the initial onset/acute phase is a good indicator that the worst is behind us. Just be healthy, take it easy,and if anything hurts, I’m advised to simply Not do it! 🙂 I’ve gone back to the hospital a handful of times after pains or new sensations and my imaging has remained the same thru all of this. Hopefully that will help in some way.
          hugs and best wishes for a swift recovery for everyone.
          Take care, Sam

    3. Kerryn, I’m sorry to hear this. I think you really need to be taking it easy still until you are all healed. My neurologist said to not get my blood pressure up but I can do light walking for exercise but don’t over do it. I’m an active person too so this is hard for me. However, remember we have our entire lives to workout, right now just be nice to your body and don’t over do it. This will take time to heal.

    4. Makes you think about these doctors do they really give the proper adequate care? Maybe mine just don’t,sorry but thats the feeling i get…………

  13. Howdy, thank you for creating this resource.

    I am 28 years old, physically and clinically heathy, and in shape.

    January 2016 I woke up at 8am with a mild headache which I assumed was caused by dehydration or fatique. From the beginning of my work day at 9am i consuned a ton of water, but the general head pain did not subside. Highly unusual for me, as I have no history of headache and had not experienced any sort of persistent head pain ever in my lifetime.

    Even though I am not a habitual coffee drinker, i thought perhaps Caffeine would help, so I had a cup of coffee at 4pm.

    By 8pm my head pain had escalated from mild to moderate and was now becomming very uncomfortable.

    By the end of my shift at 10pm head pain had not reduced. After dinner I went to bed at 12am, experiencing the same moderate headache.

    At 3am I awoke from bed, with such excruciating head pain that I was vomitting, fetal position on the bathroom floor. My Girlfriend rushed to the store – 5 minutes away – to grab ibuprofen, which I in turn swallowed but was unable to keep down as I dry heaved.

    At 3:20am I experienced extreme dizziness, and impaired motor function followed immediately by complete loss of vision, and speach. I was helpless and terrified as I was unable to see or articulate my condition.

    When paramedics arrived I had been unconcious for 10-15 minutes. An EMT woke me up and began a stroke test which revealed that only 50% of my vision had returned. The left half of my visual field had vanished, the right side was blurry.

    Speach recovered almost immediately, albeit slurred.

    Stroke caused by occipital dissection from snowboarding several days or weeks prior.

    I am still partially blind. My brain no longer processes the left peripheral visual field of either eye. The left 1/4 of my vision is completely gone…Healthy eyes, damaged brain.

    I was wearing a snowboard helmet and was riding conservatively, at a beginner level.

    We are all fortunate we’re alive to share our experiences. I am back on the mountain this season riding carefully. I do need to go in for a follow up MRI.

    Any questions or comments please feel free to chime in! Thanks for reading!

    – Aaryn

    1. Aaryn
      Thanks for sharing.
      Had a vertebral dissection this past weekend. Loss of sight for 50 seconds and room spinning out of control for two hours. Your experience sounds much more frightening.
      Congrats on getting back out there. My question is. How long did it take to heal? And then for you to feel safe being active?
      I am 33 yo, very healthy male. Main activities are surfing and heavy weight lifting 5 days a week. I love to push myself. No cause know. But I suspect myself it was the weights. No traumatic head injury or even a bump lately.
      I find I’m having a tough mental block between wanting to push myself again and being frightened of recurrence.
      Also, the first few days have been tough. I feel like I need to walk on egg shells or it’s going to burst again. What was your experience both near and longer term?

      Thank you for sharing.

      1. Hi AAYRN, WOW YOU SOUND LIKE ME I HAD A STROKE 3 1/2 MONTHS ago and a vad .I THOUGHT I WAS DIEING DIZZY WEAK BLIND IN ONE EYE THROWING UP IT WAS HORRIBLE SON CALLED 911 WENT TO HOSPITAL BY AMBULANCE HAD A STROKE AND HERE I AM TRYI TO FIGHT AND GET WELL AGAIN THANK GOD.DID AN MRA 2 DAYS AGO BUT STILL DONT FEEL TOO WELL NO REPORT YET, WAKE UP EVERYNITE IN PAIN HEAD NECK BODY TOSS N TURNING AND MY PCP GIVES ME AN ANIT DEPRESSENT LOL. NEROLOGIST IS IN SEPT GOOD THING I DONT COUNT ON HER TOO MUCH.SHE NEVER ANSWERS CALL EITHER OR TRIE TO HELP BUT I KNOW NO OTHER NEUROLOGIST IN MY AREA .SO MY PCP TRIE TO DO IT FOR ME .ANYWAY I HOPE YOUR DOOOOING WELL I READ YOUR STORY IT KIND OF LIKE MINE BUT IM LOST IN THE WOODS HERE TRYING TO RECOVER MY VAD AND STROKE..I WISH YOU THE BEST ,,,GINA

      2. I’m also so scared ,have a great hemotologist checking my blood and herititary autoimmune things .seems the hemociderin depositions can attack us somehow,but thats another mystery of confusement

        I
        hate taking plavix yuck

  14. I just had my VAD on Dec. 21 after a workout. Prior to that I was working out every other day with the same intensity. Pain in the back of the head/neck area and dizziness occurred.
    It’s only been 5 days and I just want to get back to normal. I miss the gym and the results were coming in. Hope to get back in 6-8 weeks.

    1. HI, I was at the gym too when my dissection happened. That was a year and a half ago. I was given the green light at 12 months to start working out again. It will take time to recover and this is a serious injury so you shouldn’t push yourself right now. Just walk and be calm, eat healthy, and let your body repair. Things will go back to normal soon enough for you. Best regards-Leah

    2. Robert, I’ve ended up at the hospital just 3 days ago. Same story, have been doing street work out for a year, 3 months ago leveled up to intermediate level, doing 4-5 routines weekly. Enjoyed progress very much. Last Sunday our car got stuck in snow and we pushed it in order to get it out . Monday I felt good, no trouble. On Tuesday while catching the train to work felt back neck pain. While at the office pain didn’t go away and I additionally felt dizzy.
      Went home and next day stayed home as thought this would help to get rid of pain. But on Thursday I got up with the same symptoms and decided to go see the neurologist. And after he visit I was urgently placed to the hospital. After he MRA the diagnosed the right VAD. Now I’m on meds and tomorrow the are doing another MRA. Doctors said that they might need to do an invasive therapy. I was wondering if you or anyone else here know what that might be? I’m not a big fan of surgeries, as you might imagine )) Hope everyone is getting better and we all be back on track soon! Greed, Pavel

      1. They could do an angiogram which is a procedure where they measure the level of stenosis or blockage of the dissection. In my case, they did an angiogram (which was not painful) and decided not to fix the dissection. If the blockage is significant and/or the benefits outweigh the risks, they can insert a stint that will open the dissection.

      2. Melissa, you were right, they did an angiogram, wasn’t that nice but manageable;) lucky for me they are letting me go and put me on meds for 4 weeks. Then another CT angiogram and they will tell if it heals or I need stents. Now only calmness and no sports.

  15. Hi everyone,
    I’m 12 months post VAD with TIA’s, all seems to be fine. Last MRI was a few months ago and as I’ve not heard anything I take it everything is going to plan. I take aspirin everyday. I’ve noticed that a lot of comments on here mention about drinking lots of water. That is something that has not been mentioned to me by my consultants in the UK. Does anyone know why we should drink more water than normal?
    On another note, I read an article today about a UK man who won £90,000 from his hairdresser after he suffered a VAD with stroke from having his head bent over the wash basin! Shame I can’t use that as an excuse for my VAD – my hair went out with shoulder pads!
    Good luck to all, and those who have recently suffered their VAD’s, it will get better, just takes a bit of time.
    Rob

  16. So glad to find this positive story about such a great recovery following stroke due to VAD. I went to the ER 8 days ago with vomiting and not being able to stand up. They did the usual stroke check and I had no other symptoms such as loss of weakness on one side or slurring speech. A CT scan was negative. After 10 hours of observation they were going to send me home but thank goodness one doc thought one of my eyes looked just a touch different, and ordered an MRI. Was diagnosed with VAD on left side, and had had a stroke. I was so shocked. I’m 39, healthy, athletic, do Crossfit 3x/week, have zero other risk factors for stroke. After 7 days in hospital and starting PT there, am now transferred to rehab center for more intense rehab. Balance is coming back, can walk totally unassisted, but the most disconcerting thing is this foggy feeling in my head – feels like being drunk or on heavy pain meds (I’m not on any pain meds, just aspirin etc) – I hope this goes away soon as it is so unnerving. Hard to focus on PT when so constantly dizzy/lightheaded/foggy. But overall – I’m focused on 100% recovery and will not be reading any more of the too-many-stories out there about more severe/different types of stroke that seem to have less change for full recovery. It’s easy to scare myself, but per this blog and a few other great ones, I’m committed to getting back to my former self as much as possible!

    1. You will have 100% recovery. Your age and the mildness of the stroke, plus your great attitude, will assure it.

      I am 78 and had a VAD 2 years ago, but I remember the foggy head and the dizzy episodes following the event and it scared me that it would always be that way. But “time heals all wounds” is really true. Relax and enjoy life more fully because you are alive. Remember to drink a lot of water every day! The fog and little pains in the head will retreat with time.

      Congratulations, you are a survivor, and life will be good again. My husband and I just brought home a Christmas tree, and our family will be coming here for Christmas. I have recovered and I can imagine that you will do it much faster because you are in your power years!. God bless you in your recovery!

    2. It’s comforting to read other stories of people who have been through this. I had a VAD with TIA 6 days ago. It started with neck pain & I began loosing vision in my left eye. The ER doc told me it was a migraine even though I didn’t have a headache. Luckily the neurologist requested a CT/MRI. I’m 33, do crossfit 3-4x/week. Since being home I’ve been so scared it’s going to happen again because of the sharp pains I get in my head & the dizziness (which my neurologist says was part of the healing process).

    3. Hi Kelly, sorry to hear this. Similar thing happened to me, however I’ve suffered no stroke or TIA. I remember feeling under the weather and I looked in the mirror to find my eye drooping and pupil constricted. Horners syndrome. After a CT scan and MRI it was determined I’d dissected my ICA. I’ve noticed that cross fit could be a cause, I’m also part of the craze. Two days before I was doing head stand push ups, then the day after thrusters ladder. I think I’ve either come down hard on my head or landed a loaded bar on to my shoulders and banged it against my neck? Would be interesting to know what exercises you had been doing prior to your diagnosis.

    4. Just had VAD on the 28th. I am home, but am also experiencing the foggy head, and wondering how long that will last? They believe that mine was caused by chiropractor manipulation, but I have yet to let them know. Just happy that I am doing ok. Still need to do PT to get my balance back again, but so thankful that I’m expected to make a full recovery.

      1. I had VAD two years ago at age 76. Had foggy head at first and it wore off. Am one of the few who developed post stroke neuropathy-type symptoms after about a year into recovery, accompanied with profound fatigue. Was despairing of the fatigue because doing anything significant filled me with dread – I didn’t have the energy to do it. About a month ago my new neurologist said “I think I know something that will help you.” I doubted it because I had tried so many things for post stroke pain and they only put me to sleep. But Lyrica, which was new to me, made a tremendous difference in how I feel. Almost immediately the fatigue went away – gone! I am noticing also that there is improvement in my muscle pain on the effected right side. My husband can’t believe the change. I even scrubbed the kitchen floor. Before, I neither could nor wanted to. So don’t believe that long after the stroke, you won’t see improvement, because I just have. Hopefully you will have full recovery without post stroke symptoms. Most do. But for those who develop them, there is still hope of full recovery. Keep trying different meds until you find what’s right or you.

        1. Hi Mary, As always thanks for the positivity in your messages! Just wondering what other symptoms you had or developed one year later? Seems like my fatigue just wont quit! However, after 1 year I switched from Plavix to baby aspirin and much of my energy has returned thankfully….but some days I still have zero energy- just sick tired ( which stinks with young kids)- and the neck/shoulder pain just wont quit.

          1. They were neuropathy symptoms, an enhancement of the sensations I had ever since the stroke. I noticed that instead of getting better, they were getting stronger. I’m speaking right side: foot (cold and numb, hand cold and sometimes so numb that I can’t feel it, shoulder stiff and painful, neck ache at times, right side of mouth numb. In the 2nd year as time went on, all that got worse and the fatigue was overwhelming. I tried all the traditional meds and I couldn’t tolerate them. I am quite sensitive to medication and even in small doses, they affected mind and body too much. The closest I can come to a good description was what I imagine fibromyalgia feels like. Lyrica is prescribed for fibromyalgia, and perhaps that’s why is has helped me. It took that awful fatigue away almost immediately and about 1/3 of the pain. Without the fatigue, I feel like I can lick twenty tigers today! So have patience. You probably won’t have the lingering symptoms that I had. But if you do, keep an open mind about what will help. You will come out of this just fine – and with deep appreciation for your remarkable brain.

          2. Mary- Thank you, This is good to know for future reference. And truly wonderful news that you are feeling better!!

          3. Thanks for sharing! I’m curious to know if your neck/head pain ever did quit? Did you beat the fatigue? These symptoms are kicking my butt!

          4. The pain stopped after a month. Fatigue was bad. I went from being a 5 hour a night sleeper to 9-10 plus a midday nap. Now it just varies depending on what I do. Going back to work was fatiguing for sure. Important to take all the sleep your body needs. Picture how much your baby sleeps. Same thing. Brain healing/growth happens while you are asleep.

    5. Kelley, I’m about 10 weeks post RVAD and getting back into triathlon training again. You have described precisely what happened to me – precisely!! By now you’ll be 1 month down the track and by then I was swimming and riding and also back working a bit. And now I’m training 30-90 minutes per day, have been hiking in the hills, swimming with the kids in rivers (it’s summer in Australia now!), jogging and basically doing 95% of what I was. On specialists orders I’ve kept my HR under 160 but I started in the 120 range – very gentle – and have since slowly been edging upwards. I do find that I get a bit light-headed or woozy after some harder sessions so I’m listening closely to me body and backing off when that happens. But it’s less frequent now and further into the session. I wouldn’t have believed at 2 weeks what I’d be doing after 2 months so I’m sure you will get right back to your crossfit and active life quicker than you think! Good luck.

      1. Hi. I have been looking for others who have shared the same or similar dramas with me and after nearly 3 years of looking this site is close. You see in February 2013 I was 41 and I presented to my local hospital with a sharp excruciating headache – I knew this was something as I have regular migranes and this was worse than anything. This wonderful ED gave me some paracetamol and told me to go home as it was a headache. After withstanding a further 3 days of pain I went to the cities major hospital’s ED. After 5 hours of observation with nil effect or relief from the morphine and explaining that the pain was worse than childbirth, they finally decided to perform a lumbar puncture. Following this inconclusive procedure, I had a CT with nil result, then a CTA which finally showed a brain aneurysm in the right vertebral artery. They actually then decided to treat this a little seriously and I was to be given Warfarin to treat the aneurysm. An intelligent neurologist then decided to perform an MRI prior to this treatment and this showed the VAD which requires the opposite treatment to the aneurysm. With this little dilemma the decision to not perform any treatment was established. So the diagnosis of a spontaneous right VADA resulting in SAH was given. I remained in hospital for a further 10 days under supervision, 5 more CTA’s, 5 MRI’s and an angiogram. On departure they gave me nil medication and told me to return if things didn’t get better. After 5 days I presented back at the ED as this debilitating pain had not eased. This is when they decided to perform another angiogram. During this simple procedure I had a stroke which left me in ICU for 4 days. After this time I seemed to completely recover. I then remained in hospital for another 7 days while neurologists and neurosurgeons discussed what they should do with this (apparently) rare situation. I was released home with Oxycontin, Endone, a referral to one of Australia’s top International cerebrovascular neurosurgeons, a follow up MRI in 3 months and instructions to take it easy. The next MRI showed the VAD had increased in size. At the appointment with the Professor, it was his expert advice to take it easy and this would heal itself in a few months. With another MRI 3 months following showing that the aneurysm had in fact increased in size this time with the VAD remaining but with no increase. The city neurosurgeon recommended that something needed to be done immediately but as he had no experience with this type of situation he referred me once again the Professor. This time the Professor agreed that with the VADA not depleting and in fact increasing that surgery was required immediately. With a 20% chance of something going wrong and a 90% chance that within a month the aneurysm would rupture with a low chance of survival I was booked in for surgery a week following this appointment. So in April 2014 – well over a year from when I was first diagnosed with this VADA and living with this time bomb in my head for that long, i underwent surgery where they clipped the aneurysm and then wrapped the VAD. I survived the surgery with as they say limited collateral damage (a huge scar down side of my head, half head shaved, nerve damage to left side, slurred speech, vertigo, depleted balance and motor skill control). I passed the CTA a year following the surgery or as the Professor states a great success story of his, with a follow up in a further 5 years so as to check on me and to also so they could have future data. Now with nearly 3 years since diagnosed and 2 years since the surgery I still experience debilitating headaches each month, nerve damage to my left side, slurred speech, balance and motor skill deficiency. I tell people that to sit up and walk is very much like a toddler first learning to walk. The concentration it takes. I have to sit up straight, think about what I am going to do, then stand up take a couple of breathes, watch where I am going and then tell myself left, right, left, right. I can not look around or look away from in front of my feet when walking otherwise I will stumble, veer to my right and fall over. It is nice to hear about other situations that are close to mine…..and it does help to vent!

      2. Richard thanks for sharing.
        In the scope of things being a triathlete is not all who we are, but it a life style I have grown to love going on my personal 4th year.
        After what I would call a great HIT bike, a full day of work, I went to master swim. I couldn’t swim at all 3 years ago. This winter I have finally made what I would call serious progress. About 700 meters in I went numb on right side. I got out of pool and the next 24 hours were a world wind. I had a VAD, thankfully the neurologist who was videoed in over ruled ER doctor and gave me TPA. I went from ICU to home in 48 hours. As unlucky as I was I feel lucky to be here writing this.

        5 days after, my balance seems fine but certainly my right hand has some issues. Writing, typing, ect, for lack of better word it seems lazy. The hospital told me and I was lucky to be brought to Boston Medical Center, I should fully recover and should have no effects moving forward. I would be curious to know anyone who had this and what they did to help this or is it permanent.

        That I already know isnt true. I have had minor headaches, cold hand, some numbness, it is scary as hell because they say this a freak thing that can happen to anyone.

        My goal is to get back to tri training with the blessing of my doctor and wife. I may stay away from HIT though. Also, to enjoy life a little more.

        Thank you everyone for sharing this is an incredible resource.
        Tom

      3. This is so helpful to hear about others’ experiences. I had a VAD and mini stroke Jan 9 2017. I believe it was the result of a near miss vehicle collision. Stroke symptoms have all resolved thank goodness but still working on stamina. I keep the HR less than 110 as i’m just starting to get back to exercise again. Will have first checkup late next month. I’m also curious why lots of water is recommended? I’ll start increasing that today! Hoping to get back to riding my horse in a few months!

    6. Hi.. any update on your recovery? Your event sounds similar to mine but I am about 6 weeks behind you. I am still having fatigue and not back to baseline… although you cannot tell by looking at me. I have not gone back to work yet. still doing day rehab

      1. Don’t know if this is helpful to you or not. I am 34 years older than you and probably our recoveries will be different, but Lyrica took away the brain fog immediately. It didn’t do much for the right-side post stroke regional pain syndrome in hand, arm and shoulder, but it cleared out the foggy feeling. I am 2 1/2 years post stroke. The neuropathy-like “pain” came several months after the stroke. It is a difficult type to treat, but a hot shower and some Aspercreme/Lidocaine on the affected limb does as much as the heavy-duty meds, and doesn’t affect my thinking. I have kept to my normal routine essentials and most people don’t know I had a stroke.

      2. Yes, it did but it’s different for everyone. I was 21 that was 10 months ago when I had the VAD i only really get the dizzy feeling when I’m putting a towel on my head or upside down for some reason. I did have a bad dream a month ago and when I jilted I got it then and actually thought I was dying, hope it goes away

        1. Thanks. I saw a vestibular specialist yesterday. She was hopeful things would resolve with more rehab. I’m a very active 45 year old so maybe a bit impatient.

  17. It has now been 9 months since my VAD. I have found my new normal and I am working on finding comfort in the fact that there are things I will not be able to do. My youngest kids are 12 and 10 and it hurts to tell them I can’t do certain things like go on the rides at Disney or other theme parks. Coping with my new normal is chalIenging. I have also found that I do not do well on escalators. The escalator part is humorous as I sway back and forth while riding. I don’t get the discomfort like I do on rides but it seems to throw off my senses. I write for those that also have to find their new ways of living and it’s tough but it’s just another day.

    1. I’ll bet that your balance will come back, but the improvement will be so subtle that you won’t be aware of it. I had a stroke two years ago and a year ago could not swing in a swing without feeling as though I would be overcome by vertigo. A year later I tried it again and the unsettling sensations from the year before were gone. Reclaiming your old self after a stroke, I’ve found, is a miraculous thing.

    2. I am 38 years old and 5 and half years in recovery. Do not get discouraged at your new normal. Laugh with it. Embrace it. Mine seems to still change day to day. Your kids understand. They just want you to be happy.

    3. Is anyone affected by the weather? I am two years from stroke and have noticed that rain storms and other weather changes knock me for a loop some days. Didn’t used to, but does now. At this rate, I could be a weather forecaster!

      1. Yes! Storms really affect me ( along with any sort of pressure change). My head gets this uneven pressure feeling and the headaches/ odd pains twinges get worse. I’m one year out after VAD; it hasn’t healed.

    4. I am so glad to find this website along with everyone else. I am a healthy 41 yo female. Never been sick no headaches or anything. In August I had two sever headaches two weekends in a row. I decided to go to my dr and he sent me to a neurologist. I didn’t realize how lucky I was with my awesome neurologist. He sent me for tons of tests including a CTA. I got a call about an hour after the CTA and he said I need you to head to the hospital for emergency surgery with a Nuero Surgeon. Really. Talk about scary. I was in my work clothes and expected to go right back to work after the tests. I was lucky and did not have a stroke, I am still having the lovely neck pain and the back of my head. I feel like I can never get enough sleep. I am having my second nuero angiogram Thursday for the nuero surgeon to measure th blood flow and the size of the tear (I hope it’s healed!!). I have lost so much vision in both my eyes. I am also on a high dose of aspririn until further notice.
      I feel normal reading all these posts. I heard that this is a rare thing and I find this website. It is nice to know that there are so many of us. I am glad to read so many recovery stories.
      I even asked my nuero surgeon what next he keeps saying we will know when we go in and see how the artery and tear is doing.

      Has anyone had a stent out in? I am not finding that anyone has. My neurosurgeon said if the tear is worse and bad enough we will discuss a stent.

      1. Hi im stephen 8 months ago i had my vad i recovered alittle i couldnt see talk or feel my whole left side i now see talk have use of leg and arm and hand still alittle numb and still weak i have muscle spasms in leg bad and although i can walk i cant run is it to late to recover anymore have i got back all im getting

        1. Sounds like your recovery is coming along very well. Can you arrange with your neurologist for some PT to strengthen your left side? Keep confident that your remarkable recovery will continue, because it will. Keep after your doctors for any med that might address whatever deficiency you might need to improve. In other words, you will keep returning to normal for months and years to come but you will need to show your doctors that you are going to keep pushing yourself (and them) until you are totally well again. I had a VAD event over two years ago and only recently got a new neurologist who wanted me to try a med to address fatigue and neuropathy I was experiencing. Lo and behold the fatigue left, along with pain reduction, so I am seeing big improvements at the two-year mark. I am 78 and almost fully back to normal.

          1. HI MARY,
            SOUNDS FANTASTIC! BEST OF LUCK TO YOU. I KIND OF HAVE THE SAME PROBLEMS BUT FIRED MY NEUROLOGIST FOR CALLING SLEEPING PROGRAM SHE TRIED TO REFER ME TOO AFTER I SUFFERED A VAD AND A STROKE IN MARCH 2017. I THINK ITS DIFFICULT GETTING AN ADEQUATE NEUROLOGIST WHO HAS EXPERIENCE IN STOKES AND VADS. I TOO AM ALMOST 70 FIGHTING FOR MY HEALTH AND RECOVERY.
            REGARDS GINA

        2. Hi all,had a VAD March12,2017 I am in need of DR who is caring and qualified in this area ,I live in SUFFOLK COUNTY NY ,close to SMITHTOWN . MY NEUROOGIST appt, is in SEPT, I NEEDto be able to communicate with my DR I Have issues
          Good Luck to all…..Gina

          1. Hi Gina- so sorry to hear you’re going through that. Are you in Suffolk County, VA? If so, there is a WONDERFUL neurointerventionalist in Charlottesville Virginia, it’s a bit of a drive as that is about an hour from Richmond, but he is a godsend and worth the trip- as he is extremely thorough, knowledgeable and knows this condition like the back of his hand.. and truly cares about each of his patients. let me know if you would like more information. Take care and wishes for swift healing .

      2. I had two stents put in my left vertebral artery ten months ago. A few weeks earlier I had spinal surgery and shortly after I lost my voice – it sounded weak and gravely and I needed to breathe very hard to make a sound. I was fortunate to eventually be referred to a good neurologist who had me get an MRI / MRA. After seeing the results, I was immediately rushed to the hospital and prepped for the stenting. It seems that I had a dissection of the artery which resulted in about a half dozen strokes in my brain – one of which affected the nerve controlling the left vocal fold, the others landing in benign areas of the brain.
        The procedure for the stenting was relatively quick and painless as I was administered anesthesia. I spent two nights in the hospital – one before and one after the stenting. A follow up angioplasty two months later showed the stents had repaired the dissection, but my blood flow through that area of the brain was on the low side of normal.
        Possibly because of the reduced blood flow, I’ve been experiencing light headedness every day. That would be the only side effect of the stenting that I’m aware of. The feeling starts when I wake up in the morning and stays with me until mid-afternoon. It certainly affects my mood and my ability to be active, but I need to deal with it. Fortunately my doctors say that the stents saved my life and are working as expected.
        One other thing – after four months my voice returned. So nearly a year after the stents were put in I can say that the only effect I’m experiencing is the foggy lightheaded feeling.

        1. What a fine narrative, John. I am 2 years 3 mos from stroke and have noticed that the random dizzy spells I experienced the first year have stopped now and stabilized. (I am among the 20 % or more who developed post stroke neuro pain, which is a separate issue.) My guess is that your dizzy spells will wear off in time. I would say that you were very blessed.

          1. John sounds like you did a great job and have a caring neurologist the best to you, i have no respecdt fpor drs saying aee you in yr or 6 months our condition needs a close watch constantly imo, Maybe I’ wrong ?

    5. I have the same issues with escalators and elevators. It was really bad when it first happened . Standing over Heights. Some people just don’t understand, even when you try and explain. Take care.

    6. My dear husband had VAD Nov26, 3 days in ICU, 2 days room. He’s been doing ok at home. Taking aspirin, plavix and blood pressure control medicine. Headache comes and goes. Stiff neck on and off. We booked Cancun trip while ago,, a gift for my parents their age are in middle of 70s. My husband insists that only cancelle his trip, rest of family (me, my 7 yrs son, my parents) go to Cancun Mexico as planed. I really worry about him. Is any one can give any comment should I leave himself 6 days alone at home US

      1. I am 78 and had a VAD 2 years ago. The further away from the event, the greater the chances of not having another one. Strongly advise you stick around and let your parents have a trip with their grandson. I doubt you would enjoy yourself much anyway, worrying about how your husband is doing while you are gone.

      2. It has now been almost a year since my VAD and I have found that even pushing myself a little hasn’t caused any problems. I would say that as long as your husband takes it easy and takes his meds he will be fine when you return. Not sure what caused his dissection but the doctors gave no apparent reason why. I say that to say unless he has a medical condition that increases his chances of another VAD the relaxation and meds will be fine. Hope you enjoy your trip and many years to come with your whole family.

      3. Thank you, Mark. It happened after my husband did couple swings in golf court. He had stiff neck and headache two days before this happened. Now, 2 and half week recovery, he can take care of himself but still feel so dizzy when walking out side the house. I also wonder if VAD patient can take airplane in rest of life

        1. My stroke was considered severe because they couldn’t operate because of were it was. But since it happened I have flown on an airplane a few times. I thought the same thing after it happened but my doctor said it was ok. I didn’t have any complications. It was about 6 months post stroke that I flew. I got my 2nd 6 month MRI results ,so 1 year next month, back yesterday and got great news as far as how everything looks. Thanks everybody for the support

    7. I also have had to find a new normal. I had my first VAD in march of 2015 and a cerebral artery dissection they think it was from a cough. In Dec 2016 I started feeling horrible again so I went to the ER and my blood pressure was 189/100 and I had pain in my neck like 2015 but the Dr said it was unlikely for it to happen again gave me pain meds and told me I had occipital neuralgia. He sent me on my way no blood work said he was comfortable with vitals. 3 days later is when I think I had the mini stroke the next day I finally got into see my primary Dr and she found another VAD and the one from 2015 never healed. My Arteries were 3 times normal size lots of inflammation. It feels like something is crushing my brain everyday. Weather changes affect me, stress, elevators,driving,humidity, heat,bending forward. They really don’t know why it keeps happening to me or why mine won’t heal. It is frustrating not being the mom you once were for your children. I don’t like I will ever feel normal. I also have Trigeminal neuralgia that is flared up from the inflammation. Hang in there your not alone. Hopefully you have a strong support system to help you. We watch a lot of movies as a family now since I can’t do a lot of the fun things. It is hard and I cry a lot. I hope each day is easier for you.

      1. Jean,
        I see a specialist in NYC, Dr. Jeffrey Olin at Mount Sinai Hospital. He and his team are amazing. You should be checked for FMD, fibermuscular dysplasia. Its common in woman with dissections. I have it. Its beading in the arteries that make them more likely to tear. Renal artery issues can cause spikes in blood pressure. Its not going to kill you but there can be complications like the multiple dissections so thorough follow up is key to prevent major complications. They screen all your arteries from head to pelvis ( by ultrasound and CT scan) to see if/where it is located and then provide all the follow up scans and care. Another great provider is Dr. Gornich ( sp) at the Cleveland clinic. Don’t think that your neurologists / radiologists will automatically catch FMD…. I found mine in a footnote on one of my MRA reports as a “possible cause”, it was never explained to me so I made my own appointment in a FMD clinic and I am VERY glad I did.

  18. Hi Robert and everyone,
    I’m a 53 yr old male from London. Last November (2015) I started having bouts of vertigo, followed by a couple of incidents of double vision. Doctors tested me for ear infection etc, then I started getting headaches. Long story – short, I went in late January 2016 to a private Neurologist who said I should have a MRI, and to his surprise, and mine, he found that I had a Vertebral Artery Dissection. I then had a CT scan and another MRI which showed up a number of very tiny interfractions, which I later found out were tiny strokes.
    The vertigo went by late February and the headaches stopped after taking betablockers.
    I”m just on aspirin everyday now to thin the blood. Had a MRI in June and only just got to see the consultant on 4 October 2016. He told me the artery had not healed but that I’d not had any further strokes.
    However, about a week before I had my appointment with him I had another vertigo incident, only lasting a few seconds, I clicked my neck and it stopped, but enough to think ‘here we go again!’
    The consultant has arranged another MRI for next week.
    I was under the impression that the artery tear would heal itself within 6 months and that would be that. But he said that I would be on aspirin for the rest of my life.
    I’ve not had any lost of feeling anywhere during these experiences, so it came as a shock when he told me I’d been having tiny strokes. Not something you expect to hear at my age.
    Wish everyone the very best.
    Rob
    London, UK

    1. Rob, I too experienced vertigo and vision change before a stroke. This was two years ago. I was taking a baby aspirin as part of my meds at the time of the stroke. Since the stroke I have been on Plavix. You might want to ask your doctor about taking Plavix. By the way, my pre-stroke symptoms sound similar to yours except that my right side was affected and mostly has recovered except for residual neuropathy-type, chronic post-stroke pain. Wish I could get rid of that (and the fatigue), but otherwise am grateful to have come out of it as well as I did. Am looking forward to the results of planned clinical trial (late 2017) of new pain med, led by two anesthesiologists at Cleveland Clinic, to reduce or eliminate the type of hard-to-reach pain which strokes often leave behind. You will be fine. Just keep bp down, drink plenty of water and stay calm. Brits are known world wide for staying calm!

      1. Hi Mary,
        Thanks for your reply. Not that I want anyone else to suffer, but there is some comfort to know I’m not the only person going through this.
        I’ll take your advise on board and try not to worry too much about it.
        Hope your pain soon goes away for good and you can get back to how you felt before.
        Take care,
        Rob

      2. Hi Mary,
        Just wondered if you had more information about the trial you’re taking part in. Is there a link with details? I’m interested in the progression of these new drugs. I wonder if you could also let me know how it goes?! Are you on any of the Facebook stroke groups? You can find me under Sara Jane sheikh on Facebook or on my writing blog where my stroke story is: http://novel-by-sjs.blogspot.co.uk/ if you’re happy to share. I too am left with chronic nerve pain. It’s mainly sciatic in nature and I’m having a lumbar facet joint injection in a few weeks in case OA is exacerbating/causing it. I did have some intermittent sciatica pre-stroke but my physio suggested that post-stroke neuropathy ‘turns the volume up’ on general pain. I came off Gabapentin and Amitriptyline a while ago as they made me gain weight, so I’m hunting down alternatives! I’m in the UK and am managing currently by stretching, walking, and taking co-codamol when the pain is at its worst. All the best, Sara 🙂 x

        1. Sara, The trials on the new drug are only in the planning stage. I am not in the trial as they have not been set up, but whenever they are, I want to be involved.

          I have little information on NTRX-07, but what I read sounded very promising. Here is the source: http://giving.clevelandclinic.org/articles/new-drug-alzheimers-disease?utm_campaign=catalyst+enews&utm_medium=email&utm_source=catalyst1610&utm_content=new+drug+alzheimers+disease

          From what I understand, the project still lacks funding and that is why the contact information given comes out of the Cleveland Clinic Development office. But as the article explains, they have enough funding to get started. The woman in the Development Office who is mentioned in the article is Lauren Maguire, and her email address is MAGUIRL@ccf.org. If you know of donors who could add to the funding of the project, she’s the one to contact.

          Wish I could tell you more, but that is all I know. It is a project well worth knowing about I think. As the article says, there seem to be no side effects and could benefit millions of people. It is hopeful news for sure!

          1. Mary,
            Sorry to take so long to get back to you!
            Thanks so much for that information about the drug trials.
            I will keep checking in to see what happens; these things just take so long to develop, fund, get off the ground etc. Definitely sounds promising though.
            All the very best to you, S x

  19. Hi all. Apologies if any of this has been addressed but I’m fresh into my second (SECOND😫) arterial dissection and recovery is long and painful. I am a 34 year old white female, thin and fairly active. 5 years ago I had “the worst headache of my life” for three weeks which was misdiagnosed multiple times. I was eventually diagnosed with a left intracranial vertebral artery dissection. It was spontaneous. I healed as expected and did not have a stroke. Fast forward until two weeks ago and I felt that awful familiar pain in my head. This time they knew exactly what to look for. Sure enough, right extracranial internal carotid artery dissection! I am two weeks out, home from the hospital and still in some really awful pain. I have extreme sensitivity to light, Horner’s syndrome, And the pain is just awful. There’s such little information available online but I was looking for some reassurance that this length of pain is normal. The first time around it took roughly 6 weeks before I felt like a human being again. This time I’ll have an extensive work up for auto immune diseases, including FMD. I live in Connecticut and so I am hopeful that some of the teaching hospitals in the area will be able to offer me some answers. I had anxiety after the first one now it’s through the roof! I did not have a stroke with this dissection either I’m terrified of it happening again

    1. Hi Chrstina! I hope by now you are feeling a little more pain relief from your second dissection. I am thin and very active and at 47 had a dissection 7 months ago. I have had my share of anxiety too and have spent many sleepless nights hoping this never happens to me again. I can only imagine how you are feeling. In my case, I had the headaches, neckaches, and funny twinges almost daily for 4 months then they became less and less. Sometimes I can go for a week now without feeling pain then have a headache again and “catastrophize” thinking it will never go away. But sure enough, the next morning I wake up and feel fine. They checked me for autoimmune and connective tissue diseases which came back as negative but it’s good to get that checked out.
      Hope you are healing well now. Don’t get discouraged!

      1. Hello to Everyone! My name is Maggy and I am so glad I found this site! On January 9th I drove myself to the ER with an excruciating head ache. I was discharged with a “stress headache” and given ibuprophen. During the work week I had continued headaches, neck stiffness, and blurry vision in my right eye.
        On the evening of January 15th, I had a stroke. I woke from a nap and was overcome with dizziness. I fell to my knees and vomited for about 16 hours while a friend watched my 3 kids. By Tuesday the vomiting had subsided but I was extremely dizzy and could barely walk. I had a major sensitivity to light as well. That evening I went to the ER where a CT scan was done. I had a VAD that caused the stroke a week later. I was floored upon the diagnosis. I was life flighted to Denver, CO and received treatment. I was home about 10 days later and feel better each day. I am on warfarin, as well as Tylenol and meclizine for pain and dizziness.

        Last Friday, I went into the ER with neck pain and they discovered a tear in the other artery! Ugh! I see the neurologist tomorrow and hope to have answers. Apparently I am the 1% this happens to twice with no known cause.
        I am so grateful for this site and all your positive recovery stories. I am 41, a mother of 3, an avid runner, and a teacher. Taking it easy to recover but so ready to get back out and run again. Thank you all for sharing! It has been such a comfort to know I am not alone in this:)

        1. Hi Maggy, How horrible about your second dissection. I hope you are doing better. You should get checked for Fibromuscular Dysplasia ( FMD). I have it. Its a vascular disorder that can weaken and change your arteries. There is no cure for it but it can be successfully managed by a FMD expert doctor. Google it and find a good FMD specialist that you can travel to. I see Dr. Olin in Mount Sianai New York City. Good luck and I hope you feel better soon!

  20. I had a VAD 2 weeks post Partum in March. Anyone ever have repeat ct scans? I’m Scheduled tomorrow for mine and a little anxious. Also anyone every have the artery enlarge? The doctor told me that it doesn’t usually happen.

    Reading the stories has given me hope to see so many you doing better. Prayers to all!

    1. Did you have head and neck pain? If so how long did it take for that to go away for you. I’m one week out from diagnosis and the pain is still fairly strong. Just wondering how long it lasts for people and when I’m going to be able to be a human being again. I didn’t have a stroke so I figured recovery would be fairly easy. Not so much.

      1. Hi Kristin, those were my main symptoms. Neck pain lasted for about 3 weeks, more so because my neck was so tight because I was afraid to move it. And headache for about 2 weeks. Give it some more time…best wishes for a speedy recovery!

        1. Neck pain… Sometimes it never goes away! Everyone is different! I have found the best help in the Facebook group called Vatebral Artery Dissection Support – check them out – so many answers, opinion and most important… Support!

          1. Thanks Matt! Yes I did find that right away and “liked” it. Hoping I get learn more about this monster soon. There’s not a lot of info on it that helps me much.

            Thanks!

            Kristin

      2. Hi. I suffered VAD on Sept 5, 2016, just one month after turning 50 yrs old. I experienced severe neck pain on the left side that traveled up the left side of my face & head. I was transported to one of the best hospitals for strokes, Methodist downtown Houston where I spent 2 days in I.C.U. & 9 days in a room & had a team of doctors working on me. Surgery was too risky, so I’m taking plavix & an asprin daily. I suffered a TIA stroke, so there’s no long term damage. They tell me this is one of the most rare yet most painful strokes to have. The first 3 months following the VAD is very painful. I have pain meds & muscle relaxers to control the pain & I sleep on a heating pad. I have good & bad days. The CT Scan done 6 weeks afyer incident shows no change. I still have the pseudoanerisym in the artery. I still feel pain although I’m on strong pain medication. I’m an accountant for a company & cannot work, so financially, this is stressful. I also have moments that I literally cannot take a breath nor swallow. That lasts 2 to 3 seconds, bit is frightening. They say it’s due to the VAD on left artery. Has anyone else experienced that?

      3. Hello, I just read your comment and was wondering how long the head/neck pain lasted? I’m 6 days post- VAD/TIA and I get sharp pains in my head & dizziness. I also still have the neck pain which scares me (but I’m also afraid to move it too much).

    2. I had VAD followed by stroke 3 years ago. 6 months later I had a follow-up CTA which showed no improvement — it was still completely collapsed with little to no chance of it ever opening back up. Now, 3 years later, I just had another CTA which shows it is fully open and no evidence of any dissection. Yet, I still have an achy pain that has been there since the VAD…and will probably never go away. I limit exercise a little….as to not get my heart rate too high to cause strain to that area….and no bumper cars or roller coasters. Good luck and I wish you a happy, healthy life ahead.

  21. Hi there! My name is Kristin. I was just diagnosed with a VAD of the v3/v4 junction. I was having serious head and neck pain for a week. When it started I went right to my doctors and they diagnosed me with TMJ and put me on prednisone and sent me home. 3 days later the pain was no better. It was probably worse and it was a Sunday so I went to urgent care where they took x-rays and sent me home with muscle relaxers and naproxen. I stopped the prednisone and took the other meds with little relief. Monday and Tuesday I got adjusted by a chiropractor and felt almost instant relief- the pain was not gone but halfed each time I went but some did come back. But then Wednesday it was so bad I drove myself from work straight to our local hospital where they did a CT scan and then ordered another with contrast. They saw an abnormality on my left side so they transported me to the Hospital of the University of Penn’s Neuro ICU. After several tests and and MRA the vertebral artery dissection was confirmed at the V3/V4 junction. They sent me home after one day in the hospital on an aspirin regimen and a follow up MRA in three months. I’m also out of work for the week and can’t lift, bend or carry anything. So I guess my question is , is this normal care? My head is still in a fair amount of pain and quite honestly I am scared of having a stroke. How long were you out of work? They say I didn’t have a stroke which is great but I’m worried I will. I have a connective tissue disorder so they think that with a weird move of my neck might be the cause of my VAD. Does this make me more susceptible to them in the future? Any insight would be helpful. I’m a first grade teacher and it’s a pretty physical job. They said I could go back after a week but I’m a little worried. Thanks!

    1. Hi Kristin! My name is Leah. Its been a year since I had a VAD ( same place as yours). No stroke, thankfully. I had a migraine and neck pain on and off for two weeks before I went to the ER. I cracked my neck once and got instant relief as well. I was allowed to go back to work right way but the migraines were so bad I had to go on leave for two months. I would strongly advise you to do that if possible. I took it pretty easy for a full year. The anxiety has been horrible but I can say it does get better. One year out, one dissection has totally healed ( took a full year!), the other is very small and stable and probably wont at this point. I did loads of research and started taking dark chocolate after I read about cardiac patients arteries recovering better on
      ” chocolate therapy”. I eats a small amount of dark chocolate 72 % or higher almost ever day. I contribute the healing to that ( it wasn’t healing at all at 5 month MRA) before i started the chocolate . The doctors say food can’t do that , but whatever, its worth a shot and it helped me. I still have more headaches then I ever have had. My neck still hurts sometimes and I still worry a lot of about this happening again but the pain level, the tiredness,and most of the symptoms have decreased in the last year, so stay strong!! I recently went to see Dr. Jeffery Olin in NYC ( Mount Sinai Hospital ) and was tested for FMD ( its really only in women) and found out I do have it. Its mild though. He scanned every artery in my whole body and talked to me for hours about every question I have ever had about FMD and dissections. Hands down the best doctor ever in terms of patient care and engagement. We have a 1% percent chance of this happening ever again. Pretty positive, I would say!! Best of luck! Leah

      1. Thank you Leah! Right now my primary doctor called me out of work until October 19 which is just about 6 weeks from my diagnosis. I’m sure he’ll allow more of needed. I will also see if we can’t rule out FMD. I’d not heard of that so thanks for mentioning it. It’s good to hear that others have had my issues and have gotten through them. I’m thankful for everyone’s support!

        1. Kristin, Its hard to read FMD in reports because its a rare disease ( esp. if its mild like mine), you should have an expert in the field take a good look. That’s great that you have 6 weeks off! I watched a lot of TV, read books, and sat out on my deck and really just tried to relax so I could heal. You should too. Good luck!

      2. Hi Leah,
        Thanks for your story! I was wondering if your dissection that healed with a scar showed any dilation of the artery? I’m trying to find out more information about that because it seems mine healed that way. It’s been 6 months for me.
        Thanks,
        Laura

        1. Laura- I think mine totally healed. But I read in a blog regarding arteries once ” You can live a perfectly normal life with imperfect arteries”. MY FMD doctor reaffirmed that as well. I think most of us here on this website are proof! I take comfort from that. While mine was in the process of healing it was narrowed and had a pseudo aneurysm at the site.

    1. I’m recovering from a bilateral vertebral artery dissection and I’m starting to have jaw discomfort. Has anyone else experienced this?

  22. I am really glad I found this site, it’s nice to know that I’m not alone. I am 39 years old. I have had back pain since I was 16, some degenerative issues and my doctor sent me to a pain clinic to get cortisone injections. I had quite a few of them with no problems and no relief. The last injections I received caused my blood pressure to rise and it was high for a couple weeks. My doctor finally put me on blood pressure medication but I had a stroke 4 days later. I had severe pain in my neck that morning that kept getting worse. I finally decided to get in the shower and I started blacking out almost immediately after getting in. I had to have help putting clothes on. Fortunately my oldest son had just went to fire camp and learned some essential medical knowledge. He called 911 and told them I was having a stroke. I would vomit every time I moved my head. I was in and out and don’t remember a whole lot about that day. I was in the hospital for 5 days and could hardly walk. I would fall to the right side of I wasn’t supported. Now a year later I can walk fine although I still have to catch myself sometimes. I still have some memory issues as well. I plan to go back to school for nursing and I will go for my EMT in a month or so. I might have to work twice as hard but I won’t let it stop me. I am disappointed in the health care system here in WV. They never do a follow up so see if my artery has healed. I ended up having a CT scan a few months ago for my headaches and turns out my neck has not healed. I’m on plavix, aspirin and blood pressure medication. I know I will never get injections again so I thought about going to the chiropractor to get some relief but after reading this blog I will not even attempt it. My headache dr wants me to try Botox for the headaches but I’m scared to have another foreign substance injected into my body after what happened. Thank you all for sharing your stories!!

    1. Hi there !
      I had a massive stroke almost 4.5 years ago and I can tell you for 3 of these years have had trigger point injections for pain and Botox. I understand you are nervous about this . I promise you that you will get some relief with the Botox.
      If you really don’t want to please try acupuncture. This too has been a God send to me. This was something new for me after my stroke . Stroke comes with no warning, one minute you are ok and the next minute your life has changed forever.
      I hope that you continue to recover and I hope to hear again from you

    2. Hi all. Last week I had a bilateral VAD with a mild stroke. My doctor gave me little info on the recovery process. How long do people typically stay off of work? I worry about going back too soon. Right now, I do a little walking and get tired and dizzy.

    3. Hello Angela,
      I don’t know what type of headaches you’re having, but I have had the same sort of things happening to me. I have carotid artery dissection, was blacking out and vomiting when I would turn my head a certain way, numbness in my right arm and middle and ring fingers on the right hand, and I have cluster headaches. Also known by the encouraging term, suicide headaches. It is supposedly the worst pain known to humankind. I only ever seem to get those sorts of things!
      I have also had a dramatic decline in my vision in both eyes.
      Could be the whole turning 40 thing!
      The last time I had a life-threatening illness and excruciating pain that was supposedly one of the worst kinds of pain known to our species was an 8 1/2 lb gallbladder that was gangrened on one side and necrotic, (dead and already rotting) on the other. It was the size of a full term baby with rocks sized from golf ball through to what the surgeon called “sludge” which was like aquarium rock suspended in molten lava. The ultrasound they had done on it hadn’t given him a full scope of the size of it and when he went to try to remove it from my belly button using laparoscopic entry, he had to back out. Widen the incision. The first thing I said when I woke up was, “It feels like you pulled a watermelon out my navel!” He said “No, more like a really massive baby!”
      It had ruptured on my tummy on the way out with only the slightest pressure and he told me there was so much acidic bile and infection in it if I had strained too hard while vomiting it could have ruptured. And if it had, there wouldn’t have been anything he could have done to help me. That acid would have damaged me so quickly, I’d have been lost before he could’ve prepped me for surgery. I was 31.
      So, I seem to have this special knack for either being really healthy or going flat out GANGSTER on something hardcore!
      These headaches I get are equally over the top and melodramatic! There were behaviors that I was demonstrating that were actually diagnostic clues as to the type of headache I was having, but I wasn’t able to accurately observe them because I was in so much pain. I was losing my usual hyper self-awareness.
      I paced, held my head, panicked, and would even bang my head on something.
      That sounds totally mental to me, but the pain is so severe, I suppose there is a reflexive urge to distract one’s self from it. I had been put on ever increasing amounts and strengths of heavy narcotics, culminating at the top with continuous release morphine. It held some of the frequency back, but I still had break-through pain. Morphine was never going to be an answer for it long term, anyway. It is, in every way, a drug to die on.
      My neurologist told my GP to take me off of it and give me oxygen.
      I was so distraught. I could not face the possibility of not having any pain relief at all and having to go back to suffering those things every two hours all day and night. I would rub the spot on my head where it hurts until I’d rubbed a bald patch. It is only ever in one single spot, every time. I thought I had a tumor, at first. Apparently, that’s what most people deduce with these headaches.
      I couldn’t sleep. I could go to sleep, but I would wake in debilitating pain after about two hours of sleep and then be up the rest of the night wide awake in pain. If I got a single degree hotter than my internal thermostat allows for, the headache would be on me in a flash. Anything can trigger them. Or nothing.
      Not much rhyme and no reason at all.
      Well, normally, I’d have dismissed the oxygen thing outright and just gone back to my suffering, but I figured they would have to relent and give me my pills back if I was at least attempting to be compliant and it wasn’t working.
      Very much to my surprise, it did work!
      I can’t go anywhere for more than an hour or so unless I take my little portable tank with me, but, that’s better than being permanently homebound and in pain.
      I don’t know if my cardiovascular situation has anything to do with these headaches or not, but I wanted to at least mention the oxygen thing before you have to have to succumb to bovine poison! Has your doctor ever discussed oxygen therapy with you? They had threatened me with botox, and I am petrified of needles and will do anything to talk my way out shots and IV’s. (Maybe at some point, vanity will overtake phobia and I’ll want it) But, I have even absconded from hospitals in a gown with my backside shining like the ivory moon trying to dodge an IV, only to be hunted down and returned by my Mom! .
      Not even as a child, this is since I’ve had babies of my own! I have hidden in cafeterias and once ducked into someone else’s room to hide and just happened to have gone to school with the guy and we sat and chatted until a nurse found me and dragged me back to my room. Also, the thought of nasty cow rot paralyzing some part of my head or face terrifies me. I can’t stand not being able to feel a part of my body. The numbness in my arm and fingers has very nearly driven me insane. I suppose, judging from how all this makes me sound, it would seem like quite a short drive to insane from where I live!
      I am so tired all the time. I have put on about 25 pounds and the constant swoosh, swoosh of my pulse wears me out as well.
      There is a certain way I can turn my head to get it to hush for a while, but I have to be so careful. The first time I quickly moved my head and went sick and blacked out, I honestly thought it was just a reaction to the pain of it.
      At night, if I lie on my right side, the numbness and pulse thing disturbs me.
      But, I can’t turn on my left because that’s the headache side. Also, I cannot stand feeling my heart beating because I swear it skips around and often just stops for a good 10 or 15 seconds at a time and after 20 minutes of that frightening scenario, I just give up.
      I am originally from the US, but I live in England now. I have wanted to live here since I was a little girl. I wanted a well-spoken, well-educated, blue-blood Englishman for a husband, a little blond boy with an Etonian haircut and a cute little British accent, and a grade II, listed character property. (not much, lol!)
      I have all those things, and by all rights, should be blissful beyond belief.
      It is frustrating to be dealing with the ancillary nonsense, but I am still very grateful to the universe. I have always found a way to make seemingly impossible dreams come true. I shape my will to a particular goal or goals, put it out there in the wide cosmos and focus, believe, work hard, and achieve!
      We just get one spin on this rock, I plan to be full spun out before it’s over!
      The one thing my parents gave me aside from unconditional love was a strong belief that I could do anything under the sun that I put my mind to.
      And, strangely, I have always been able to do just that.
      I guess health issues that are outside the margins of my control worry me particularly. And now that I’m 40, my mortality is so much more tangible than it ever has been before. It sounds like the healing prognosis on the carotid dissection is quite promising. I wish everyone here the very best!
      These posts have been educational, informative, inspiring, comforting, reassuring…my adjectives are getting redundant! I will definitely come back to see how everyone is doing, maybe even write another medical drama novella!
      (I think I may be proud of myself a wee bit for surviving these things that sought to take me out! And I am excited and thankful that you all are still here after what you have been through! It’s kinda like winning!! hahah!)
      I hope you get some relief soon, my love!
      Take care everybody!
      All the best!
      Charlotte
      xx

      1. Hello Charlotte- I just wanted to say I thoroughly enjoyed this post. Thank you! It is so positive, informative and it made me smile, laugh, cry, and find some inner strength over this whole VAD diagnosis that I didn’t realize I had- to help pull me through this process toward healing. Thanks again!

    4. Hi,. A few weeks before my artetie dissection I had my second dose of steroids in my knee, who knows. Its been 3 month an I still recovering, currently taking comadin and doing nothing, my left side is waking up since I started feeling again warn and cold. But my left leg feels like having bengay on all the time, lime a burn sensation that dont go away. My right eye still a bit smaller than my left and I lost vision on that eye. Hopefully after 6 month and I get my new MRI is all good and could start a normal life.

    5. Please go to the best neurologist available to discuss botox shots. 3 weeks after my VAD, a pain management Dr wanted to give me botox to help with the pain. I also suffer with migraines. Like yourself, I was skeptical. I have a fantastic team of Drs working on me with VAD & since they didn’t offer botox, I passed on the offer. I told 2 of my Drs about it the following week and both immediately were shocked and said absolutely not! They explained the botox needle is about 2 or 2 1/2 inches long. They showed me my CT Scan and how rhe needle could easily hit that artery & would cause death. I have a pseudo anerism as well. I don’t want any of us to have complications after we survived a VAD in which majority don’t survive! Take care & stay blessed

  23. This site is incredibly helpful!

    I’m 31 and I had a chiropractic neck adjustment 2 months ago. Immediately felt dizzy/vertigo and had memory loss. Life was still manageable though. However, a couple weeks ago I mowed the lawn for 45 minutes and suddenly felt very flush.

    I had two MRIs, neither of which showed any stroke signs. However, I’m convinced I have VAD since this happened IMMEDIATELY after the adjustment. And now since mowing the lawn, I have the following symptoms:

    -Off balance to the left
    -Head pressure
    -Muscle weakness in both arms and legs which worsens every day (very concerning. anyone else ever experience this???)
    -Fatigue
    -Memory loss

    I’m on Nattokinasse (blood thinner), but I’m not improving. In fact, my symptoms seem to worsen every day. Anyone else experience this? I wish things would just level out first, and then begin to heal. I’m afraid I’m going to lose all function and feeling in my limbs. Any encouragement would be very appreciated. Thanks!

    1. You should do an MRA (or CTA) to check for a dissection. At a minimum, it could rule it out.

      Personally, it sounds like a vertebral dissection of some sort. Dissections get worse when we lack water so mowing the lawn for 45 minutes could have narrowed the artery causing less blood flow to your brain.

      You should also consider joining the facebook group: “Vertebral Artery Dissection Support”. People are very quick to answer questions and there are very useful discussions there. You may learn a lot!

    2. Yeas I had those symptoms when I first suffer the stroke. Both of my arms and legs felt asleep, vertigo, vomiting and neck pain. I was lucky to go to a hospital were the had a stroke unit and the Doctor in charge of that unit was working in the emergency room that day and in less than two hours they new what happen to me. I spent two weeks at the hospital with vertigo and vad vision in one eye. The firs four to five days I suffer an incredible headache. If I was you, do an MRI or CT, they did both studies on me but the MRI show more. Also do a heart and lung MRI, you never know. My Mom suffer a pulmonary embolism and had same symptoms. Also you could have a pinch nerve..Go to a different doctor

  24. I am a 41 year old, healthy, active father and I recently had a cerebellum stroke due to a vertebral artery dissection. It was in January and I had just gotten home with my daughter who said she was sick and needed to be brought home from school. We were only in the house for 15 minutes when I slipped trying to put on my shoes and my whole world started spinning. I bounced off the walls as I made my way to the bedroom to lie down, which brought to comfort to the spinning. I quickly made it to my bathroom and vomited constantly. I felt like I was going to fall off of the floor, so I just laid down and held on. After a few minutes I found that if I just laid on my right side and didn’t move, I was ok. If I moved an inch I would get violently sick and dizzy.
    My first instinct was that I had vertigo and it would just go away. Luckily my daughter, who is 9, was home and she called my wife. I convinced my wife to not call 911 (this was a mistake) because I thought it would go away. I took some motion sickness pills and they didn’t help. After 12 hours of laying on the bathroom floor unable to move, I agreed that I had enough and was ready to go the emergency room. They initially treated me for vertigo and left me in the triage area for a couple of hours. When I didn’t get any better I was sent for a MRI and CT scan, where the stroke and dissection were found. I spent 5 days in the hospital just being watched because the artery that dissected isn’t able to be worked on. After a couple of days I was able to move off of my right side and everything slowly returned to normal. It has almost been 3 months since my stroke and after physical therapy, I am almost back to 100%.
    My question is what are my chances of this reoccurring? My doctor thinks it was my artery bumping against the hole in my skull that it goes through causing the dissection. I have read all the stories above and recovery times vary. I am worried about returning to work and the stress my job entails, in turn spiking my blood pressure, and cause a relapse. Any thoughts?

    1. Hi Mark,

      Your experience sounds similar to mine (I wrote the original blog posts about my VAD and stroke here). It does seem like you’re on the mend, which is great. And, feeling afraid of a recurrence must be normal—I know it loomed large for me initially. I still have a bit of fear about another VAD/stroke from time to time, but it no longer dominates my thoughts.

      If you’re controlling your blood pressure and taking it relatively easy for a while to confirm your vertebral artery has recanalized. If there were no genetic factors in causing your VAD, your other risk factors are controlled (hypertension, smoking, etc.), and you’re not subjecting your neck/arteries to trauma, then you’ll likely not experience a recurrence. However, everyone is a unique snowflake, so it’s not a guarantee.

      It has been 4 1/2 years since my VAD and stroke. I try to be as active as I was before the stroke. When I’m riding my bike and pushing myself in a workout, I get my heart rate up into the 170s without any issues. So, if you want to stay active, my bet is that you can. Working with your physician(s), especially your neurologist, will help you figure out when you can resume more strenuous activities.

      Thank you for writing in and sharing your story. I hope your recovery continues!

      -Robert

      1. First, thank you for sharing your experiences in an open forum where others can learn and help understand VAD; it is greatly appreciated.
        My Sister is 38, plays tennis every day, and is a picture of health; she had a dual VAD 6 days ago. She had partial paralysis immediately afterwards and due to her excellence health, was walking around the hospital until yesterday, it seems she had an episode that caused permanent paralysis for about 1 hour. Within 8 hours, she was able to move all her limbs and hobble to the bathroom with assistance. Because she was in such good shape, she wants to get up and walk but I fear she is pushing it too much and risks another clot or aggravating or re-injuring the tear; the doctor said most people don’t survive a double VAD so I am fearful she is not taking it easy enough.
        As a big Brother, I have to be careful not to overstep my boundaries so I thought I would ask the question to this group of people with first hand experience.
        I think she should try to keep her neck as static as possible to give those arteries time to heal properly. Since I am not a doctor I am hesitant to say anything unless I have some type of factual data to back me up; her doctor told her no neck manipulation but has fallen short of neck immobilization.
        Because of her active lifestyle, she inadvertently does things out of habit that I feel can harm her long term. Texting in her hospital bed with her head looking straight down. Bending down to pick up something she dropped out of her hospital bed and other small habits she has that I feel might re-injure her.
        Am I being paranoid or is there a real danger here? If you guys could give me a glance into your recovery and PT I would greatly appreciate it. I wish you a speedy recovery and thank you again for taking the time to edify others.

      2. I can’t wait to get out on the playing field again. My wife graciously acknowledges my whims but strictly holds me back from maybe hurting myself.

      1. Hi, I was off of work for 3 months and I am on limited activity for a year. I am fully functional and have no problems with anything I do but to play it safe, my doctor asked that I do not play any sports for a full year. It took about 2 1/2 months for me to fully regain mobility. also I have had to schedule an MRI every 6 months to make sure my artery is healing properly.

  25. I has a VAD followed by a stroke…its been a year now and a half now. I was short sighted before and it seems to have gotten worse, as I sometimes get blurry vision. My neurologist thinks it has more to do with my eyesight and so planning to see an ophthalmologist. I have a 2.5 year old son and would really want to have another/others, anyone with an experience of pregnancy after a VAD followed by stroke??

    1. Carol,
      There are neurologists who specialize in eyesight- they can be hard to find – the one I saw was at New York Presbyterian. They go way beyond what an opthamalogist would do – may be worthwhile seeking that out…
      -Matt

    2. I was 12 wks postpartum when I had my VAD and 5 strokes of the cerebellum. It has been a very long road, but I am going to bed tonight for the first time in nearly two years without pain. I credit that to excellent physical and vestibular therapy. It look 16 months for my VAD to heal, but it has. I was cleared by neurologist and high risk pregnancy physicians to have another child if desired. Their recommendations were close monitoring and daily Levonox injections throughout the pregnancy and for 90 days postpartum. I have decided against further pregnancies, but have two beautiful daughters to enjoy. Best of luck to you.

  26. Hi, I’m a 36 year old woman and mother of four young kids and I have two dissected arteries, Right carotid and Left Vertebral . Both are inside my brain. I never had a stroke but had head and neck pain and sinus pressure one the left side of my face and arm and leg tingling and numbness. I went to the hospital after 11 days of this- the symptoms were mostly mild and would come and go- I thought I had pulled a neck muscle in spin class. The NP at the ER diagnosed me right away with the VAD! Thank God for him too, he possibly saved my life. (During those 11 days I was working out at crossfit, camping outside with my family, jumping on the trampoline, and playing in the swimming pool- its amazing that I am not dead.) I got the diagnosis and returned home paranoid as all heck to even turn my neck. I have never felt such utter terror- sheer sweat drenching terror- that I was going to do something to make it worse. Every twinge created panic. Those first few weeks I would lie awake at night feeling every particle in my body and head, terrified I would not wake up- or even worse perhaps, wake up as a diminished shell of my old self due to stroke. Eventually I stopped fixating on it and started feeling better. Four months out I go to see a Hopkins specialist and they do a repeat MRA. The radiologist sees the right carotid was dissected and missed on the two previous MRAs. Note: make sure you have a radiologist that knows what they are doing. At four months- no healing has taken place on either dissection. I’m bummed to put it lightly. I still have symptoms that randomly come and go. Neck pain/ headaches tingling and numbness on my face. The Hopkins neurologists says this isn’t from the dissection, but I know it is,never had it before the dissections. I’m working on being positive, eating and sleeping well. My question is did anyone have dissections inside their head that healed? It seems that the arteries on the inside are more fragile and I’m wondering if that’s why they aren’t healing? Thank you all- I’ve read and re-read yours posts about a dozen times!

    1. My wife has been in hospital for 15 days with 2 corotid artery dissection from just a sudden fall. Hopefully I can learn a few things from here

      1. Bobby, welcome and sorry to hear the news about your wife. I’m recovering from a vertebral artery dissection from August of last year. I did not stroke but it’s always touch and go. Following my near fatal rollover I spent a lot of time researching this condition. To date the artery remains occluded and unlikely to ever function. Fortunately the two vertebrals feed into a manifold called the circle of Willis which though now only receives blood from one side it still fills an distribution to both sides of the hind brain received at least a sufficient amount of blood. Your wife’s carotid is a much larger concern as it is a much larger and necessary source of blood. I’m assuming that along with blood thinners the Neurovascular doc plans to address this through more invasive means. Specific medical info along with emotionally supportive details are the purpose of this site and would be interested in trying to help if you could provide a current status and prognosis as is available to date. For you to be strong for the kids is important but you need support and positive energy along the way to sustain your own well being at this time. Please let me know any relative info and I will, and others here can better help to that end. For now, as you look for signs of hope, be vigilant to the data from the doc and keep close to whatever support bases you can. We are all here for this reason. Refuah Shlemah (complete healing prayer) for your wife.- Brandon

      2. Hi Bob, Such a scary time for you both. I remember those early days just dragging on.Did your wife have a stroke? I imagine she did if she’s still in the hospital. All the journals that I have read state that if you survive the initial event and are young and healthy, ” 90% of people have an excellent prognosis for recovery”.

    2. Leah, you have such a pleasant and invigorating approach. You commented on a post of mine from Feb 10 or so. I wanted to thank you for recognizing what I was trying to convey. I remember my first several posts here. Not atypical! We all want answers and we would like them as soon as possible, if you don’t mind… I’ve been there! So I can make fun of those of us who have spent way too many hours researching and self/web prognostications. I felt inclined to share something that struck me as I read your posts. First, I understand that there are few medical conditions that demand imminent attention more than stroke or dissected arteries/occlusion. The rate and rapidity that rarely precedes these is much of what causes our dramatic reactions. And who wouldn’t? But beyond the first 48, and into the third, fourth and fifth months, morbity greatly diminishes. The tough stuff out of the way, what if we learned from our experience the obvious, redundant and trite life lessons that our predecessors tried to convey to us? The true meaning of life… The existential. To maintain brevity I conclude, in summary, instead of worrying about the granite stone and what it should read, we set out to, as best we could, carve our living into the hearts and minds of our loved ones, friends and heck, the world!! I hope this doesn’t seem inconsistent with my sincere empathy for my partners here. I should have died. No one survives “that crash”. But I did. And to the end I battle with the aftermath but G-d only knows how much my wife and boys have benefited from my desire to pass it on and give them every tool I cannot take with me to the dust, whether it be tomorrow or 30 more years. The quiescence stands firmly in the way of love. Love is trans-generational unless it gets trapped in a pine box having never shared.

      1. Brandon, Do you write? Your message are always elegant so I wonder if you write as a profession or pastime? I am a professional researcher- something that has definitely NOT been healthy for my sanity the last few months! I have self diagnosed myself with everything under the sun. I find I alternate from freaking myself out to to searching for articles and books to calm my panic and soothe my soul. The logical thing to do is stop looking for answers and statistics and just try to lighten up. You are right, if you survive- and everyone here did- chances are excellent that you will be just fine !

    3. hello, I am so glad to have found this site. I had bilateral vertebral artery dissections in 2008 and have never been the same since. Even after followup scans showed they healed in 2009, I have horrible neck pain from being afraid to move my neck, and it has gotten worse in the past two years after an MVA in May 2014. My neck pain is to the point where it hurts to walk, chew, etc. and daily migraines and can’t look from side to side. I miss my active lifestyle so much. And as you all know after having this happen to you, you fear the worst- brain tumor, recurrence of dissection, etc etc. I just got done with an ENT work up because my new primary thought my pain is from my sinuses. Today I have an appointment for psychical therapy because my Dr’s think my pain is from not having a good range of motion. But what if in 2014 during the accident the arteries tore again and just havent healed? I am just so frusterated with all of this and don’t know where to go. I don’t have a neurologist that takes me seriously either, they think depression/anxiety is causing all my issues. Of course I feel depressed, this has taken over my life. If anyone has ideas on how to find proper care and reassurance after this sort of thing. please let know. Most people don’t even know what VAD is .

      1. I didn’t even know a site like this existed! I just had a second dissection. My first was in 2013 a left vertebral artery with a stroke caused by a chiropractor and I just had left spontaneous carotid artery dissection in January, thank good no stoke this time, but, they can’t tell me why it happened. I’m a RN and I work on the unit and am horrified to work in fear that I may cause something to make it happen again. I am on a 20 pound weigh restriction and do you know how hard that is to actually adhere to in everyday life especially working as a floor nurse with sick patients? But on top of the dissection they are telling me that there is a 3mm psedoanyersm. They are sending me to every which doctor now but no answers so far. I have chronic pain, headaches all on the left side of my head, fatigue, foggy headed, numbness tingling in my hands and toes, I repeat myself, diagnosed with narcolepsy after my first dissection and stroke and now it all flared up and intensified. Neurologigist had NO answers for me today, do t have a reacan until April to see if the artery I’d healed and the clot and anysem is going away to see if they want to do any intervention or not. They are sending me to a rheumatologist to work me up for possible connective tissue dissorers?!? Has anyone ever had a third or fourth dissection ?? This is what I really fear?? Can this just keep happening????

      2. Hi Ruby- For your own piece of mind, find a neurologist that will listen to you and rescan with an MRA so you can rule out dissections from the 2014 accident. That alone will make you feel relieved- it would for me. I suffer from severe face pain that is partially caused by the dissection and partially from me being so tense all the time after this has happened. My teeth are inadvertently clenched ALL THE TIME. It took me a long time to figure this out though. I got on muscle relaxers and consciously unclench my teeth and the face/neck pain has gotten better. So my problem was a combination of a real problem being made way worse by something I was doing inadvertently. The more I focused on the pain the worse I felt, the bigger the problem became. I am in no way discounting your pain or your situation but if you can get on some muscles relaxers that may help you. I am praying for you that this resolves. Believe me, I know exactly how you feel.

        1. Leah, Thanks for mentioning muscle relaxer for facial pain. You have confirmed what I had been thinking, so I will ask my doctor for mild muscle relaxer.

          I noticed that at night while in bed, and upon waking up, I have very little facial pain so a muscle relaxer during the day might help. Would like some suggestions for dealing with muscle pain and acute hand numbness (and extreme coldness) on my right side. Sometimes I feel as though I have been wrapped in ropes that tighten themselves often around my upper right arm. My fingers feel as though I am wearing stiff leather gloves. It has been 1 year 4 months since the stroke and my post stroke pain is hanging in there like a pest. I will appreciate suggestions of what others are doing to make the pain easier to live with since it has become my constant companion. Someone who works in stroke rehab has written that people who have had strokes have to work twice as hard as people who have not had one, and I believe it. Whether washing dishes or making a meal, it is twice as much effort. Would love to hear from others what lightens the load and relieves the pain. By the way, I am still making progress and believe that eventually I will be my old self, but it is a solitary road with few “experts”. That is why hearing from others is so uplifting and helpful to me.

      3. Hello Ruby, I am Robbin 60 years just hadVAD which happened at work just while sitting giving report to fellow nusrses! I am experiencing headaches and am very cautious about turning my head and the neck is sore feels tight and yes I too feel very anxious at times which gets me depressed as it is not my basic makeup! I used to take care of everyone , go everywhere so to let you know apparently that we are not alone and I do believe there are still mysteries of medicine and on behalf of all of us who share these oddities of s/p VAD maybe they will put all of our side effects , neurocies whatever one wishes to label it ! And possibly gather some conclusive evidence , that these are things that go along with certain particulars involving some dissections , as mine was referred to as “Spontaneous dissection” ! And I also pray and give thanks to God everyday !! I am going to Doctors today … Let’s see what questions can be answered! Today we can smile at the sun!

    4. Leah,
      I had spontaneous bilateral vertebral artery dissections with dissecting aneurysm that did extend up into the base of my brain. This was 19 years ago! And yes, they can heal. I still have scar tissue in the arteries which is visible on subsequent imaging and I have some pain still but it’s manageable. My right side had the aneurysm and that’s the area that gives me the most pain still….whenever I’m very tired, sick or very stressed it hurts the most. I hope you heal soon and completely! Take care and don’t give up hope. I was 34 when this happened and I’m now 53 and have raised my two daughters and now have 2 grandchildren and one on the way 🙂 Stay strong!

      1. Diana, Thank you so much for your kind words of hope and strength! It brought a tear to my eye actually. I’m doing better. Have a small bit of healing on my carotid ( it took 8 months for that!) but no healing on my VAD but I’m just taking it day by day and trying to not hyper- focus on this so much. Thank you for taking the time out of your day to reach out to me, it really meant a lot and made me feel better. Leah

  27. Hi all,
    A lot of time has passed since I post my message . In my last visit with the neurologist, she told me that my two arteries were totally healed. Now I am having just an aspirin for six months and that’s it. I am practicing all kind of sports. The doctors told me to do just what I was doing before the dissections.
    Recurrence in dissections is very rare so I am living my life like this wouldn’t have happen. I will remember all my life this experience, my fears, my family absolutely worried at hospital but as time passes this memories are very far from me.
    I wish a lot of luck to all of you that are in the healing process and think positive, you will be healed in months.
    Kind regards

    1. Thank you. Joe. for the encouraging update and to know that you have made it back to health and an active life!

      God Bless you and your family.

      Mary

      1. Thanks Mary, we all know how important is our family in this process. Unfortunately all of us have seen the suffering in our families. So we have to give them back as a present our recovery

    2. Thank you I had a VAD a week ago and I am scared but will get better. I am scared it will happen again but I believe in God and positive thinking, Love Heather

      1. Heather, it is normal to be scared. I was too when I first had a stroke 18 months ago. Not so much any more. At this point I am working on dealing with residual effects of the stroke and am going to be assessed soon by a team specializing in Complex Regional Pain Syndrome (CRPS). I have a feeling that concentrating on strengthening certain muscles which were weakened by the stroke is going to be the key to getting rid of what chronic pain symptoms I have. I am over 75 and I think no-pain recovery is taking longer than as if I were 40 or 50 years younger. If it would interest anyone, I can report back what I am told at a clinic where I will be evaluated for CRPS. There is an excellent explanation at this link http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/definition/con-20022844

      2. Hi everyone I am Sharon I had a VAD also a mild stroke on the 21st March was in the hospital for 6 days I am so scared I will not get better ,I work in a nursing home the work is very heavy and hard I an scared I will not be able to provide for my 9 year old son ,my neurologist told me I can lift more than 10 lbs so
        No work for me ,does anyone know how long this takes to heal

      3. Its been 3 month for me, I guess you never stop thinking that it will happen again. I am hopping that at six month the arterie heal so I could relax and get back to my life.

  28. I was on the squash court and started losing my vision about an hour after playing. I went into hospital and a CT with contrast revealed I had the VAD. I am male 35 years old. It was suggested that an odd neck movement could have been the cause since I am generally healthy and fit. I was told to avoid any abrupt neck movements or massage/chiro for at least 3 months while remaining on blood thinners.

    I was told I could resume exercise normally, but no roller coaster type activities to keep my neck from being tossed around. Please share with me your doctor recommended recovery time. Thanks!

    1. I am a 33-yr old female that had spontaneous VAD followed by a stroke 3 years ago….reason unknown. A vascular neurologist mentioned at that time that there was little to no chance of my right vertebral artery opening back up. Upon a CTA scan a few days ago, I found out my VAD has completely healed. I look forward to my dr appt with the neurologist coming up. I will continue to live with a few restrictions that include no bumper cars, roller coasters, and any quick neck manipulations (some sports that require lots of neck turning).

  29. I also had a vertebral artery dissection. On April 28, I was hiking and ended up calling 911 when I suddenly lost my walking skills and started feeling pain in my jaw. Speed forward I have had numerous doctors appointments and it now looks as if the artery has healed itself. I was taken off of warfarin and now take aspirin each day. Now what? Can I return to a normal routine with the exception of neck jarring activities? I want to start running again and working out without the thoughts of what if…I feel great and have seen the scans and the doctors have said I can return to a normal routine, however they haven’t suffered this trauma so I’m a bit of a skeptic. Any thoughts or suggestions from anyone that has been through this?

    1. Rich… the first thing to do is to realize how lucky you are… if you read some of the stories on the site, you will realize that many others are not so fortunate. I am glad to say that I was one of the fortunate as well… and for two years after my stroke I stopped working out and literally didn’t move my neck. I would turn my whole body. I stopped running and swimming out of fear that the physical activity would create some sort of re-lapse… the fact of the matter is… you’re healed.

      You’re healed… I was told that many times by many people but it so hard to believe someone who didn’t go through what you went through. Six years after my episode I look back and am upset that I didn’t move my neck for two years (that created other problems)… that I didn’t start working out again, swimming, tri’s, etc.

      I am not a doctor, but from everything I’ve been told and experienced… your dissection is healed… get back to life. It is incredibly hard because a VAD is so scary. I know… but, really, get back to it… you will be ok. You may, like many others, experience weird things our brains healing have done to us, weird sensations, numb cheeks, hot hands or feet… but it passes, and its not another stroke.
      Best of luck,
      Matt

        1. So none of you remember my story. It was eight months ago and I lacked brevity in the telling of it. But I get these updates and I read them. Briefly, I didn’t stroke, may HIS name be blessed, but I lost the left vertebral artery in a rollover. I have fought little battles v. The horrendous wars that have beleaguered most of you. Though commonality is crevaced I just wanted to weigh in by saying that to all of you, as mentioned, consider yourself blessed or lucky if you are Irish but either way consider yourself. Consider the future of yourself. Are you thankful? For what and to whom? And in that consideration are you willing to take what you have and inspire those who are not so inspired… This can be the opportunity to make your generations proud. Survivors preclude surviving. Not so trite is the “pass it on” mentality. But to pass it on means that you first, must endure. Our being on this earth depends on those who went before us and endured hardship in many facets. Peace and life to all of you and may your name be for a blessing in due time. A blessing to those who come after. It was well said that those who overcome become the lit path to them that search for hope. Thank you for the stories of inspiration that many of you have shared. To those who are still struggling, find peace in those who have struggled before you and overcome. G-d bless you all!!

          1. Beautifully written sentiments, thank you. I must say that everyday I wake up and just feel so thankful and blessed that I can hold my children one more time and spend one more day on this planet. This experience has been on of the hardest and best thing I have ever endured. While my life is far from perfect still, this has given me new clarity, deeper gratitude, and helped me to resolve some unresolved issues. I have written a will, thought ahead and said many prayers. Things I never ever would have done. Most importantly, the people that I love the most know it and I know their love for me and in the end there is no greater power.

    2. This site is so helpful, I am glad I found it! My dad has suffered from a VAD three weeks ago and is slowly feeling better. He is still suffering from headaches and needs a lot of sleep, but reading through previous comment, that seems to be “normal”. My dad lives abroad and we have planned for him to fly to us very soon. It is only a two hour flight and doctors have said that it is ok for him to fly, but I am feeling uncomfortable with the thought of him being in the air,. He is due to fly in 10 days which would make it just over a month post VAD. Does anyone have any advise please? Bettina

      1. This site is so helpful, I’m 31 and laid in hospital after VAD last week. At this point no one can really tell me anything aside from the artery is responding to drugs but still has a really fast flow which is not so good.

        Any advice anyone who’s been here can offer would be great. I am an ordinarily fit and healthy 31 year old mum of one. It’s quite distressing having the Unknown to wake up to every day.

        Many thanks

        1. Lynsey, You wrote ” It’s quite distressing having the Unknown to wake up to every day.” Welcome to the Club! I’ll wager that everyone who has a VAD episode says the same thing.

          Over a year ago (Oct 2014) I experienced a VAD and I am 77years old. I think your return to normal will be faster than mine because of your age, but the brain fog I had is gone and much of the muscle weakness is also gone. You will get through this so concentrate on eliminating the risk factors and looking forward to returning to your regular routine. You will know more about your condition as time goes by. We all complain about not being given much information from health professionals but maybe in your recovery process you will run across a good neurologist who will dispel some of the mystery. Check in often and let me know how you are progressing. Remember, you have a remarkable ability to bounce back from this: You are young and healthy, and your body is capable of finding new paths and repair damaged ones. On my last visit to the neurologist she told me that the artery was healed and showed me on the MRI where a new blood path had been created. It takes time, Lynsey, so give your body time to recover…and don’t worry. If I at 77 can get over this, so can you!

  30. Okay, I’m from the UK. I’m a 47 year old female who suffered a left-sided V.A.D on 8th October 2015, so I’m just shy of one month along the track with this little box of horrors. But the whole thing actually started for me about mid-August when I got neck-ache at the base of my skull. The headaches kicked in next and kind of settled above my left eyebrow, the neck-ache moved around the left, sort of around my ‘gland’ area below my ear. Numerous visits to my GP got me nowhere near the right diagnosis. This is what has come to frustrate me, now – how very little is known about V.A.D, how unheard-of it appears to be amongst clinicians. I would say that, despite it being a fairly rare condition, this fact needs to change! If it was recognised sooner, we all wouldn’t all end up having strokes!!

    One month before suffering two ‘small brain-stem infarctions’, I ended up in A&E at the Queen’s Medical Centre in Nottingham for the 1st time. I went with continuing neck and head pain plus debilitating vertigo. From all I’ve read of other people’s experiences now, I see that our symptoms are all so similar, (our misdiagnoses too). It really is about time doctors started to recognise this. I was sent home from A&E with anti-sickness tablets and a vague diagnosis of “Chronic head-ache & positional dizziness.” Other GP visits diagnosed: Vertigo, Labyrinthitis, Migraine and finally neuralgia. The physiotherapist I’d started seeing thought it was a trapped nerve in my C spine due to my hyper-mobility and poor posture. (I have a history of Scoliosis and have a rod in my spine since the age of 15.)
    I ended up on amitryptyline and codeine for nerve pain before I woke up at 4 a.m. on 8th October with a numb right side and swallowing problems. I choked on some water and couldn’t cough. After lots more GP confusion I ended up in hospital but, to cut a very long story short, it was about 2 days before I was put on Aspirin, 2 days before the neurologists actually pinned down the ‘most likely’ cause from my MRI. (‘Raggedy’ left vertebral artery – probable dissection).

    I was home after 5 days and am told that the arterial tear will take 3-6 months to spontaneously repair. Like everyone else, I don’t really know how long it will take for ‘me’ to recover, however. I’m scared of a recurrence, am hardly moving my neck (but, at this stage, I have been told to rest), I’m really tired (anyone else have this????!!!), I get ‘ice-cream head’ in the evenings, cannot feel pain or temperature on my right side – though I’ve been getting weird heat sensations which I guess are false. (My Consultant said that I will get a lot of odd sensations throughout recovery). Much of my head is numb, presumably because I also suffered cranial nerve damage on the left (so I have a drooping left eye and a smaller pupil – Horner’s Syndrome).

    One thing I haven’t read on anyone else’s posts is a mysterious ‘lack of headaches.’ My headaches, which were excruciating at times, have gone since the stroke; though I still get a muted version of the weird neck sensations I’ve had all along, which I instinctively knew was at the root of all my problems from the start but which were mainly ignored. I think my head-aches are now buried in the numbness. Was else anyone told that? Anyway, this is getting very long. I know I’m lucky to have survived, I know I’m luckier than many. But I’m also a little angry about this whole thing; that it was allowed to happen at all. I’ve been trying to get an article into my local paper, so far to no avail, just to raise awareness. I’m sure websites like this must help; so thanks for creating it 🙂

    One final thing to note was that they found no real cause for my V.A.D but, from all I’ve read since coming home, I would put it down to my over-stretching my neck during yoga (I’m very bendy) plus doing a lot of ceiling painting. (I’ve read several times that this is one of the worst positions for one’s neck.)

    Good luck everyone 🙂

    1. Hi Sara,

      I may be across the pond from you but I share your angst that the medical profession is so uninformed about stroke. I had symptoms 2 months prior to the stroke (October, 2014) which, if I had recognized what was afoot and had a doctor who could have recognized my symtoms as trouble, I could have avoided the whole thing. I was having vision changes and nearly passed out during one 3-day period weeks prior to the stroke.

      A year later I am still here and carrying on and getting better all the time. So many nights I would struggle to get into bed and figure I probably would not wake up in the morning. At first every odd ache and pain seemed as though it was a signal that the end was near. At first, at the stage you are now, I slept all through the day and all through the night. Now I don’t need a nap and my energy is about 80% returned. It happens gradually. Give it time. Your health will “sneak back” while you aren’t looking. Suddenly in a few months you will notice climbing stairs is easier, that you don’t need as many naps, that odd pains are less or have disappeared. My right side is still odd man out, but I have found a good neurologist who is addressing those sensations and eventually they will be gone. Don’t despair. Your body is repairing itself. Do what you can to help it. Drink lots of water, walk as much as you can. breathe deeply. You will recover but not on your schedule – it will be on your body’s schedule.

      1. Hi Mary,

        If you don’t my asking, what happened to your right side? The reason I ask is because my right side has been greatly affected by my VAD. I have strong tingling sensations and have not found a way to make them better except for taking gapapentin to numb the tingling.

        -Ksenia

        1. Ksenia,

          I am taking Gabapentin, too, and for the same reason. After the VAD my right side was affected, especially right side of mouth, shoulder , arm, and foot, hand. I went for physical therapy this summer for 3 months and it made the numbness in fingers worse as well as the sensations around my mouth of the muscles being pulled to the side. I take 100 mg morning and 100 mg at night of Gabapentin and it helps to quiet down the sensations. I am getting my energy back and am walking more. I can see that in another year or two there will be even much more improvement to the point where I won’t have any symptoms. When I first had the event , I slept almost all the time, day and night and my brain seemed fogged. All that is gone now. My event was a little over a year ago.

      2. Hi Mary,

        Thanks so much for your encouraging words. I know I’m in the early stages of recovery and need to be patient; (have no choice really!) I’m not the most patient patient, but i’m trying 🙂

        Your story is very encouraging. Whilst I’m trying to be as positive as I can, I do worry about the ‘right-sided’ issues (especially being right-handed.) I fear that, because this is due to stroke/brain damage, it’s less likely to be recovered than if it were from local nerve damage, but this is just my gut feeling. Hopefully I’ll come back here at a later date and tell you I was very wrong.

        I hope that you continue to improve too and completely recover the odd man out. I was reading up on neuroplasticity today; presume you will have heard of it? It’s when a different part of the brain steps in to take control of the damaged areas, allowing them to re-function. I suppose that’s how we all recover from nerve damage, but I think you need to make your body realise it’s dysfunctioning in the first place (from what I’ve read). I guess the brain might not care that your leg is numb, from an operational point of view! I want to read up more on this and be pro-active once the VAD is healed. As you say though, for now, I need to rest and recover, slowly but surely.

        All the very best to you,

        Sara 🙂

        1. Sara, Visualize often your “old self” so that your brain does care whether your leg is numb or not. It is the same kind of exercise that improves basketball players’ skill at shooting baskets even when they aren’t on the court. If you haven’t read it, I recommend “Pscho Cybernetics” which tells us how to use our remarkable brains for setting a goal and how the brain helps to achieve that goal. What you mentioned is the “re-wiring” of the system that researchers are discovering.

          Given that information of how the brain works as a computer, we can program, through visualizing, that our hands and feet are warm, no numbness or pain in specific parts, taste buds work, bladder behaves, fingers can perform flawlessly, no tightness in shoulder, in short, picture you”normal” in every way. If we don’t tell the remarkable brain what we want from it, I doubt we will get full recovery. I have used psycho-cybernetics so many times to achieve other goals that there is no reason to believe that it would fail in this assignment. If you have never done it before, the thing that may be hard is trusting what the author calls the servo-mechanism. That is the prompting that the brain will give you in order to achieve your goal. Pay attention to those prompts; it means the brain is working on the problem and is handing you solutions. Let me know your progress. BTW I am right-handed too!

    2. Sara,

      Hang in there, it gets much better with time! I had a month of neck and head pain which went away right when my stroke happened. I also find this interesting but definitely feel fortunate that I don’t have daily headaches anymore like a lot of people do.

      Have you joined the Facebook group for VAD support? There are a lot of people in the group and it’s very active. People with all sorts of stories, symptoms, side effects, advice, home remedies, etc. It’s a good place to get some insight on this issue.

      -Ksenia

      1. Ksenia,

        My VAD was on the left. AUG was my year mark. I still have head and neck pain but it’s manageable. I take Topiramate and without it I could not have returned to my normal activities. I am active duty military and also was turned away when I went for medical treatment. My left leg, hand,eye and part of my lip is a little numb. The new doc thinks it will stay that way. Cognitive and memory can be a battle when you know it’s something you can and have done before you were hurt. I completed an 8 mile road March the other day. I could not imagin in January I would be able to walk straight much less carry weight up hill. Returning to runinng has not been easy and I cannot do it for a long time but I can walk very fast. 5.2 mph. Somethings are similar and some are different but just stay positive and stay active. Walking is great!
        Rose

      2. Ksenia,

        (What a lovely name you have, by the way!)

        Thanks for your words too. It’s so strange to talk to people who share the very same experience. Ten/twenty years ago this wouldn’t be possible, would it?! It sounds like you have made a remarkable recovery. Funny how this happens so often to fit and healthy people.

        I have attempted to join the facebook VAD support group, yes. Thing is, all you can do is request to be a member. There is no opportunity to explain why or express your circumstances. It’s a closed group; perhaps it was ‘open’ when you joined? Anyway, my ‘application’ is still ‘pending’ with them – so not sure if I’m ‘in’ yet or not. 🙂

        Weird about the headaches and, yes, I am so grateful for not having them right now. I have another ‘gut feeling’ that this won’t be the end of them, however. My consultant said that the headaches were usually the thing to persist the longest. With me, I really feel that the numbness is masking them because I sometimes I feel a different kind of sensation, like a pressure, in the places where they were. It’s like a double-edged sword though; whilst I want to numbness to go away, I don’t want the headaches back!!

        Looks like it could be one or the other…

        Anyway, thanks so much for commenting. Keep running and keep getting better! All the very best to you,

        Sara 🙂

      3. I can’t find the FB site. I had VAD and aneurysm July 4, 2015 as well as PICA infarct. I’m having issues with spinning I’m a little worried I will never stop spinning . I’m 35 and a single mother of 5 I’m on my own so I’m trying to get better as quickly as possible . Any advice helps

        Thanks Dezi

    3. Hello
      My 24 years old sun also suffered from a VAD 3 weeks ago. The diagnosis of a VAD was only made after 15 days in hospital (!) as the doctors originaly though of a rare syndrom called “Guillain Barré” (which has some symilar symptoms).
      However they did not further investigate the (high) possibility of a CVA or a VAD and did not even undertake a MRI (only a scanner which did not show anything) and that is really shocking.
      Antoine is back home and has the follwing sequels:
      – Visual problem with left eye (this is the biggest handicap)
      – Difficulty to swallow (but can eat and drink with some difficulties)
      – Does not feel heat or cold from left hand
      – Can speak clearly but has no voice (vocal cords impacted)
      – Can walk but sometimes does not control his right leg properly
      They only prescribed Kardegic to fludify his blood and have programmed another MRI in 3 months.
      Our major concerns and worries are :
      – Is he going to recover? How long might it take?
      – Can the fact that the treatment only started 2 weeks after the VAD reduces his changes to fully recover?
      Thanks in advance for any comment or feedback.

      1. Hi Didier,

        I’m not far enough along the road to be able to advise you but, if you haven’t found it already, try the VAD support group on face-book – (search for Vertebral Artery Dissection Support), it’s very active and lots of people will respond and help. You need to request to join and it took almost 2 weeks for me to get the okay! So, be patient, I think it’s a busy little site. Good luck to you and your son. From everything I’ve learned so far, there WILL be improvement over time. Nobody can say exactly what, when or how much though, that’s the unknown part.

        Take care, Sara 🙂

    4. Hi Sara and everyone else,
      Hope you’re all well and feeling ok. I had my VAD on the 23rd August in Portugal whilst on holiday with my family. To say that was a nightmare is an understatement. I spent a total of 16 days in hospital before being flown home on the 8th September.
      On the morning of the 24th I woke up having lost all movement on my right hand side, it felt like an out of body experience.
      But the most difficult loss to cope with by a country mile was losing my swallow. That was horrendous.
      I read with interest that it took nearly 2 months for your VAD to come to the surface. This is very similar to my time scale.
      I also have a droop in my opposite eye the left and I am experiencing “ice cream hand and leg” it’s a lot more severe at night.
      This little forum I found this morning has managed to answer lots of questions.
      I’m now 10 weeks from my VAD and feel constantly tired, numb, slightly heady and completely fed up.
      I try the best I can to stay positive but sometimes it’s hard as you probably know, those anxieties slowly creep up on you.
      On the positive side of things I’ve recovered my swallow and I now enjoy all the things I used to have pre-stroke. I have regained the movement in my right hand side but still retain the loss of feeling temperature and numbness especially in my face, again this is worse in the evening.
      I have a myriad of health professionals who threat my medical and mental issues, they have been wonderful and basically answer any questions I have.
      But that said, talking to people who have shared the experience is extremely helpful.
      Finally the people on here have made me feel I’m not alone, it gives hope and a feeling of sharing something that is unique to us all.
      Thank you Sara and the rest of the people that have taken time to contribute to this forum, it’s made a 55 year old feel not so insular anymore.

      Martyn

      1. Hi Martyn,

        It’s weird how similar your situation is/was to mine – time-scale and symptoms. Nobody else has really mentioned the ‘ice-cream’ head thing, which I’m currently finding the most depressing aspect. Like you, mine is worse in the evenings, it also seems to be worse when I get even slightly cool. (I’ve never been good with the cold.) I wonder if the fact that it’s worse in the evenings is to do, mainly, with holding our heads up all day, which (presumably) will compress nerves more than when lying down?! (But that’s just a guess). I always feel best, snuggly in bed in the mornings before I have to get up.

        I wanted to reply to each aspect of your comment but now I’m in the ‘comment box’ I can’t see your reply any more, so forgive what I miss. I have to rely on decrepit memory now, (was bad before all this.)

        I feel for you, having suffered stage one VAD abroad. I can only imagine the nightmare of it, knowing how bad it was at home, for me! What country are you in, btw? I hope that you continue to improve.

        I feel a bit better than when I was last on here but there is no movement/improvement on the right-sided numbness/pain/temp – as I feared, but it’s still early days. I’m finding that every few days feeling better are usually followed by a few days relapse. My b/f thinks that this is down to doing slightly too much because/when I feel more ‘normal’. Do you find this?

        I know I’m not doing enough exercise because of this. I keep telling myself that I’ll do loads when I know the VAD is healed, that I’ll walk every day, etc. But my day job is pretty sedentary; and being a writer keeps me glued to the chair at the best of times. It’s very easy to do so little right now; especially on bad days.

        Anyway, have you joined the VAD support group on face-book? (Search for Vertebral Artery Dissection Support.) It’s very active and useful. When I clicked to join it took ages for me to get the okay! So, be patient, if you’re not on there already.

        And keep me posted on your progress!

        Take care, Sara 🙂

      2. Hi Martyn, and everyone else. I am a 42 yr old female and I I have had neck pain and headaches everyday for 2 years, I went to the ER for neck and shoulder pain, numbing and headaches and was admitted, diagnosed with Vertebral Artery Dissection at the hospital Dec 3, they told me I could not fly till after the 19 of December, well I live overseas and I was lucky enough my family came here for Christmas. I fly home next Monday the 28 and even though the neurologist said it was ok to fly, I am still terrified, it’s a 10 hour flight. Now the thing is I was not told that I had a stroke. Has anyone had this situation before.
        I appreciate the help, and wish you happy holidays/ new year.
        Damian

      3. Damian, I was told the same thing. NO stroke, that i am sound neurologically. I know that I do not feel the same. I was in the hosp in the ICU for a week on heparin after I was diagnosed. I am very thankful I did not have a stroke but years of frusterating neck problems, headaches and other issues have ensued and I have a hard time finding understanding healthcare providers.

    5. Dezi…
      Search for “Vertebral Artery Dissection Support” on FaceBook… lot of people there discussing a lot of things and a lot of help…

    6. Hi everyone, ive never replied to anything on the net but this web site has helped me so much since april 15 when my husband of 41 dissected his right carotid atery. He survived but is left with a pseudo aneurysm but is doing so well, since his last scan in sept our vascular consultant has found he has something called eagle syndrome where he has 2 bones that they think may have rubbed on the carotid and dissected it. There going to operate and cut them out as they may of been the cause along with the high blood pressure, Def worth googling it to find out more as its very rare! He has another scan next week so fingers crossed the dissection has healed. Good luck to everyone x

    7. hello my name is Amanda from Georgia the USA I also had a VAD left sided, it was on Sept 18th 2 days after a brain surgery on the 16th I too have hypermobility and than found that I had chiari all due to a genetic disorder that causes a lack of collagen In skin, joints blood vessels called Ehlers Danlos it causes scoliosis in ab out 90 percent of people. they just started learning this I am 4 months out from VAD still unsteady gait and dizzy. I a m 32 w two small children , one day at a time, it Is not EASY!

      1. Hi Amanda, hope you’re doing okay! So nice to hear from you; your experience and conditions sound so similar to mine. However, I don’t think that, here in the UK (due to NHS costs etc) that we get in-depth testing for genetic and other conditions (without a fight, at least). I think they tend to diagnose the immediate disaster and try to leave it at that, if they can get away with it. (In my experience so far.)

        But I have a consultant follow-up at the end of this month & I will be asking a lot of questions! I have hyper-mobility too and had scoliosis as a teenager, for which I had a spinal rod correction. Do you have scoliosis? I’m so sorry to hear about your condition. I’ve had no major adverse symptoms until now and I’m 47. I wonder if this means I might not have Ehlers Danlos because, perhaps, I would have known about it by now. From what I’ve learned. I’m trying to learn as much as possible about this whole enormous field because so little seems to be known.

        The trouble with my case (at the moment) is that my VAD diagnosis was their best guess (educated, albeit). Because they couldn’t actually see the dissection. All they could see was a small and ragged left artery. My stroke symptoms (like mild Wallenberg Syndrome without the ataxia) were what clinched the diagnosis. Presumably you’ve found the f/book support groups, by the way? They help loads:

        https://www.facebook.com/groups/94854960694/
        https://www.facebook.com/groups/5326941831/

        If you’re not already on them, it might take a while to gain admittance – they’re pretty busy sites.

        What is your unsteadiness like now? Is it related to the dizziness? I’ve had vertigo for the last week and a half (got milder, took motion sickness tablets), but it’s still there. Apparently our brains need to adjust to the damage by learning how to deal with balance again. You might know loads about this but, if not, I’ve just heard about Vestibular Therapy – which entails exercises to help your brain adjust. Someone posted a link on one of the facebook pages. I haven’t had time to try them yet because I went back to work yesterday on a ‘phased return’. Are you working?

        On the plus side, lots of sufferers say the dizziness began to subside at 4 months, so yours may clear up at any moment!! Hope so. All the very best. Keep me posted! Sara 🙂 x

  31. I can’t say how relieved I am to see a web page about this. I suffered a stroke from a spontaneous VAD in December of 2010 when I was 25 years old and have been lost ever since. It would not have been so bad, if the stroke had not left me 73% blind. I never recovered my eyesight and can only see a little to the left which I must be grateful for the ability to see at all. Though it has been so many years and I’m gratefully free of those rat-poisoned blood thinners, I’m curious if anyone still suffers from the neck pain or headaches???? Mine have never ceased and cause me daily pain. Though the doctors have checked my neck time and time again and assured me that the dissection is healed, I have no idea what is causing the pain and am curious if anyone else is having this problem?

    1. Caelan,
      So sorry to hear that. As I indicated in my story, I too went blind after my stroke (from the center line to the right) but my sight came back within a day or two… very lucky. The thing I’ve experienced with neck pain is that while it does eventually go away… it comes back every once in a while just to remind you that it was once there… as a matter of fact my neck hurt yesterday and today is just fine.

      I know how scary it is but I did go to physical therapy to work on my neck to loosen it up and that did make it feel better. I have to imagine you’re like I was and don’t move your neck much… turns out that’s the worst thing you can do because the muscles get too tight and can then cause you pain.
      Hope that helps.
      -Matt

    2. Hi Caelan,
      In 2013 I had spontaneous bi-lateral vertebral dissections and stroked on the right side. In my late 30’s super fit no high blood pressure, diabetes, cholesterol – they still don’t know why. I lost sensory not motor on my left side and the stroke(s) damaged a few different parts of my brain – mostly memory and cognition. I went to rehab for six months and back to work, but I’m in corporate finance and it has been a struggle. I just called time out and taking time off. I’m scheduled for a neuropsych test next week. I’m trying to get the old me back.

      Like you I still suffer from debilitating headaches and pain that radiates from the base of my skull down my neck and out my shoulder. It feels like I have a pen stuck in my eye.

      I’m going to tell you that you need to change doctors if they only just re-image you. It’s not uncommon to have this pain afterward and sometimes mine will switch sides – it’s crazy. There is a nerve near the brain stem where I stroked and when the muscle around it gets agitated (in my case my brain sends constant signals) it tightens up and causes the pain. It’s mirror of the eye and neck pain I experienced the weeks before the stroke. It’s as if my brain didn’t get the memo that the dissections are healed.

      I take gabapentin which coats the pain receptors and takes my pain from sharp to more dull pressure in those areas. I also take Cymbalta, which is an antidepressant but it helps with neck and eye nerve pain amazingly. If I had to choose Cymbalta or gabapentin I would choose Cymbalta that’s how well it works for me.

      There are also nerve blockers they can inject into the base of your skull to dull the spasticity and it will stop the pain and headaches. There’s also a nerve block that they shoot into the front of your neck (outpatient surgery) and into your spine I guess, I don’t know but I had that one too. Botox in that area is also an option. I haven’t tried Botox yet. My brain seems to be a bit of a jerk but a lot of people have great success with the blockers. I guess all i would say is that if there isn’t a dissection anymore, focus on what’s causing the eye and neck pain – which is spasticity.

    3. Hi Caelan,

      I’m sorry to hear you’re still having daily pain. Have you joined the facebook group for VAD support? There are a lot of members with great advice and all sorts of side effects and symptoms. I know there are many people in that group who still suffer neck and head pain despite their dissections being healed like yours. It is such a mystery. My dissection is healed but I still have my tingling and nerve damage.

      -Ksenia

  32. Thank you for setting up this site!
    I suffered a VAD & stroke in January 2009. At the time I searched for a site such as this… I was in need of hearing about others experience and most importantly… about others LIVING through it! Now that I am through it… I feel the need to let others know that someone else went through it and it is possible to get better.
    I suffered the stroke on a Friday night wrestling with my kids, my entire right side went numb and tingly. It was 6:45 and by 7:15 I was in the ER… unfortunately, as many can attest to – the ER is usually not the best place to be with a stroke. My GP sent me to the stroke ICU at Columbia Presbyterian in Manhattan. After my left eye had rolled back in my head I had gone blind from the middle line in my vision to the right and needless to say I was terrified. One of the crazy things about this entire situation is the lack of answers… no one has them…
    Long story short after spinal taps, x-rays, and MRI/MRA’s they finally found the dissection. My vision slowly came back, I was put on blood thinners and still take a baby aspirin today…

    However, that was only the beginning. After a heart attack they can tell you to exercise and change your diet. There are drugs for diabetes. They can cure so many things… but not stroke. The fear of something happening again was almost debilitating. I remember every little tingle in my arm, numbness in my face, twinge in my leg sent fear coursing through my body. I literally didn’t turn my neck for two years although I was assured that the VAD was healed and hence still struggle with a sore neck (doesn’t help anything). I spent another couple more nights in the hospital with what I thought were more symptoms (which turned out to be herniated disks in my neck). Its a long road… very long… and lonely. But there are others out there that went through it and things do get better!
    But the best part came last January… I actually forgot the anniversary of my stroke. The few days after when I realized it brought tears to my eyes. It takes such a toll on your psyche but you can and will get better. It took me six years… but it does get better…
    -Matt

    1. Matt, that account of your 6-year history after VAD stroke was so reassuring to me. A little over a year ago, I too, had a VAD stroke, and the ER ruled out stroke, but fortunately I was admitted to the hospital and a hospitalist suspected a stroke and ordered a test which found it. You are absolutely right about no one knowing anything concrete about a stroke, compared to other health diseases. How many times I have asked a question and gotten “everyone is different.” I know all about the fears when the neck gets stiff or feels like a hot poker is on the back of my neck, or wondering if a dizzy spell is a forerunner to something worse. After a year I have finally been reunited with the neurologist who cared for me in the hospital and who brought me through it. She has just ordered and received the report of an MRI and MRA and called to say the numbness in my face and hands I have described are not caused by any new strokes but symptoms of the original one. She told me to add baby aspirin to the plavix I am taking and that the more time that passes from the original stroke, the better the odds that I won’t have another. At last I have a doctor who I have confidence in and who actually knows my condition. This after months of not knowing much and expecting something awful to happen at any moment. To hear from a 6 year veteran of stroke that there is light at the end of the tunnel is wonderful! Thanks so much for sharing your journey. For what it’s worth, I am resolved to walk a half hour a day as briskly as possible and this winter to walk in a gym. Also to breathe deeply (oxygen for the brain) and to remember to drink water often. I am in my mid 70’s and I think having the stroke may actually prove a blessing because I will stay more active and eat more carefully than I otherwise would have. I am also more thankful for every day of life.

      1. Mary,
        That’s fantastic that you found a doctor to listen to you or even empathize with you. Too often I had doctors answer my questions with a simple “you’ll be fine…”, that didn’t help! I was only 41 at the time of my stroke, little kids, etc., and no one had any answers. I too had the numbness in the right side of my face, strange feelings down my arms… all of which terrified me at the time but no one to turn to who would understand.

        One thing I did was talk to a friend who was a cancer survivor… he said don’t expect people who have never been through something like this to understand… they can empathize, but they never really understand the fear… the fear of death, the fear of sitting in a wheel chair, the fear of not being able to care for your family… keep breathing, keep walking, you’re doing great!

        1. Matt, I am anxious to know, after 6 years from stroke, if you still have any lingering symptoms? I am one year from stroke and have gotten back 85% of my energy, and the brain fog is gone. However, I have numbness and muscle “pulling” (that is the only way to describe it) in my face on the right side and especially around my mouth. I also have extreme numbness and coldness in my fingers (foot as well), numbness in arm, and my shoulder tends to want to freeze up. I have taken 3 months of pt which helped, but made the tingling, numbness, mouth muscles problem worse. My Neurologist has given me the minimum dose of Gabapentin (Neurontin) for the nerve pain and she believes over time it will diminish and I will be free of it. You said you had tingling and numbness too, so I wondered if it eventually went away? Did you do anything specific for it? My handwriting is improving, but it is painful to write checks. I type all personal correspondence.

          I will appreciate your response and I will bet that others will too.

          Thanks, Mary

      2. Mary,
        Honestly, I think it took at least two years before I felt “right”… I continued to have neck pain, the right side of my face was often numb, I would suffer from dizzy spells (not so bad that I would fall down… but certainly didn’t feel right). What confuses my situation is that I was then diagnosed with three herniated disks in my neck… this contributed to arm and hand numbness, etc. So, now I cant say what caused/causes what… honestly now about four times a year I still get neck pain with the numbness in the face. But now I have no idea what the cause is… But I can tell you that all of those things that every doctor tells you shouldn’t be happening, but still are, go on for a long time… personally I got “used” to them… which essentially meant that I could fake that I was just fine when it was all happening… but it doesn’t get any less scary except for knowing that others have gone through it and do get better!
        -Matt

        1. Matt, so comforting to know your experience. Hope the disk problem gets straightened out.

          Thanks so much for responding. By the way… toyou and others reading this, I have gotten a great deal of good from a product I call a rice bag. Grampasgarden.com sells them and their rice bag shawls are what I and our family love. Everyone…even the grandkids…have one. For me, I heat one up for 5 minutes on high and it warms my cold numb feet and numb shoulder and cold, numb hand so that I can sleep at night. I’m thinking it might feel very good to your neck!

          Mary

      3. There is light at the end of the tunnel. I had a VAD (right side) stroke 3 years ago. A CTA the other day showed my VAD has completely healed. I still have slight memory loss and achy pain at the base of my skull/neck area where it occurred. I can exercise and live life normally….yet do use caution. Good luck to all!!!

  33. Im a 47 year old female. I just found out yesterday I suffered a VAD on the right side 2 weeks ago. I suffered major ischemia in my brain. Fortunately my symptoms resolved rather quickly ( peripheral vision loss and confusion ) I’ve been sleeping a lot and still suffer daily headaches. It was so great to find this site for support. I’m on Plavix and baby aspirin for 6 months. Doc has limited my activity as well which is a bummer as I am an active person. Fear of this happening again affects me greatly. I’ll keep checking in. Thank you to you all for sharing your stories. God speed in everyone’s recovery and healing.

  34. Thanks for publishing this site. Last month I was diagnosed with a dissection in my left vertebral artery, and via angiogram two stents were inserted. I feel very fortunate that my general doctor sent me to the ER for a CT-Scan after I told her I had headaches for seven days that would not go away. The doctor who performed the stenting was amazing and I am so grateful for his intervention. I hope to be able to find more information about recovery and life after the stents. Still not sure what types of excercises are ok for me. I used to love yoga but am afraid of doing yoga because it involves a lot of next twisting. I am scheduled for a follow-up angiogram diagnostic in December. Thanks again for this site and greetings to all.

  35. I have not received any notice of postings to this website since June 12, 2015. I think I may have been “dropped”. I had a VAD 11 months ago and started PT 2 months ago. The PT has made the stroke symptoms (right side) worse. More numbness around mouth, tingling and numbness and coldness of hand and foot. What causes the increase in sensations? Has anyone else had this experience ? (I hope it is part of the healing process.)

    1. Just ran across this site as I was looking for info. I suffered a VAD and fractured C-6 in late August. I survived after flipping my truck three times. I am a walking miracle. I am waiting for my first follow up with Neuro in November. I have mild dizziness but nothing compared to most of you. To the ones who come here later looking for answers I would say this. Every case has similarities and differences and you are best to avoid self- prognosis based on what you read. Be thankful you are here reading and trust but verify everything your doc says before you hang on his/her words for security. There are too many good/bad ones and if you want the best care I will always recommend a well established teaching hospital. I don’t want to belabor this post with medical commentary but conclude by saying Never Give In to the fear, anxiety and depression associated with the seriousness of this trauma. Support, information and a doc who cares are your keys. Hope cannot be understated and it comes from faith in the One who is responsible for the divine design it has taken millinea to even begin to understand on our level. VAD ‘s are scary and often debilitating but they also most often heal themselves. You need to nurse any related clots and aspirin is best and Coumadin is well, big Pharma and often more risky than the benefit. I have found neck support very helpful when the dizziness and pain/stiffness flare. I have a Miami J collar from the C-6 fracture. I wear it occasionally. Also, as others have stated PT and reduced sensitivity thru exposure to symptom induction (carefully) is a plus. You know your body better than anyone else. Do what helps. Finally, to all who have come here and do I wish you all Refuah Shlemah!

  36. My 33 year old wife, Mary, had a left side VDA with stroke on October 25th, 2014. She was watching a movie in a theater with a friend and our kids and had intense headache. As she was walking out of the theater, her right side went paralyzed and she collapsed / sat down and was unable to speak or respond. Her friend called 911 and she was rushed to the hospital. I arrived 30 minutes later with our 2 month old son. From what they have told us since then, being post-partum was the risk factor that caused the dissection & clot.

    The ER doctor told me that TPA was the standard treatment within 3 hours of stroke but that it could either kill her or heal her. I had no experience with strokes whatsoever. I was standing there with our baby and didn’t want to kill her. I said no to the TPA. He phoned a Neurologist at the stroke center they were going to medevac her to, and the neuro asked him to ask me to reconsider and that she strongly advised me to let them give her TPA. I asked the ER doctor if that changed his opinion. He said no, he thought it was the right decision to not give her TPA, as it could kill her and she was likely to recover the same either way. I again went with the “no TPA” decision. I have lived in agonizing torment over that decision every day since.

    That was the “day of”. She was in the hospital for 2 weeks and spent another week at rehab. She was unable to talk, walk, swallow, and was completely paralyzed on her right side at first. By the time she left rehab, she was able to walk pretty well, had recovered some of the strength in her right side, but was still unable to speak much or read or write.

    Fast forward to now. She has regained nearly 100% strength in her right side and maybe 90% of her speech, but she still has headaches and dizziness. In the past 9 months, we’ve had two TIA scares and she spent 4 days in the stroke unit both times. The first time really was a TIA and the second time (about a week after running a 5k) we don’t know what it was… just sudden onset of extreme dizziness and a massive headache and a slight drooping on the right side of her face. Since then, she has struggled with almost daily dizziness. It comes and goes. Also, she has recurring headaches and pain on her right side from head to toe. Sometimes it’s less than others, but sometimes it’s really bad pain. Her right side also feels cold.

    She has been struggling with anxiety and fear. We have four children under 10 years old, and the thought that the pain in her head or especially the pain in the right side of her neck is another stroke coming on or another VDA can cause almost debilitating fear. Thus, why she asked me to do a google search for people with similar symptoms. She has made a lot of progress in speech and is reading and writing short sentences, but is unable to write this length, which is why I’m typing this.

    We’ve spent the last hour reading through the comments of this forum, much of the time in tears. Thank you so much to everyone who has written about their experiences, it is hugely encouraging for her to read about other people’s challenges. As many of you have mentioned, stroke recovery is an isolating experience and reading this forum has allowed her to hear the voices of others in similar circumstances. Thank you, thank you.

    Her big question is whether her neck pain and headaches could be symptoms of another stroke or VDA or something serious. The doctors have told her that a re-occurrence is unlikely as her one risk factor (being within the post-partum window) has passed and she is otherwise a healthy person. However, like others on this forum, we’ve received conflicting information from doctors and it sometimes seems like they are guessing rather than stating facts. Of course, no one can know the future. But can anyone give advice on how to overcome the fear of another stroke? Or whether neck pain and head pain necessarily means that something horrible is happening? Her VDA was on her left side, but it’s her right side head and neck that are really hurting.

    Thanks again for the encouragement and the hope that we’ve found here. God bless you all & may he grant each of you a full recovery and a long fulfilling life.

    Seth

    1. I was also postpartum and suffered a VDA at 36. My neurologist says that someone with a VDA should never do activities where your feet pound (running), there is a sudden stop or start or risk of falling. Following those rules, I have been able to curtail the dizziness and headaches. She recommended stationary cycling for cardio. 13.5 months post VDA, life is finally getting back to normal. My anxiety over having additional strokes has lessened.

    2. Going on a year from my VDA on the left side. I also enjoy working out. The pain and stiffness on the head and neck is horrible at times. The dizziness can be mitigated with practice. I take Topiramate it has helped me be able to do more. i understand what your wife is going through to an extent but everyone’s path is their own. Things start to turn on again. I think of it as light switches. At first I could barely walk or even drive. Now I am almost myself, my left side sometimes bothers me, for me it’s a warm numb like feeling. It comes and goes. I have found that elevation changes is hard on me. This was unexpected during hikes. Which makes sense as the blood can’t move as though as fast. I was gasping for air. I suggest avoid that… It hurt. I just take it one day at a time, and walk a lot . Good luck I hope it helps to know your not alone.

      Rose

  37. I am 1 year and 1 week post VAD, and 4 strokes in my cerebellum. I am scheduled for a CTA in the morning to check the status of my dissection. The last CTA showed it to no longer be occluded, but still not healed.

    I presented with severe left eye, neck and shoulder pain 6 weeks prior to the strokes. Saw numerous physicians and er trips to no avail. I was 12 weeks postpartum and they believed it was a hormonal imbalance giving me migraines. I thought I was the only one! Little did I know.

    I presented to the er vomiting, dizzy, unable to walk and in horrible pain. I was discharged after 12 hrs and told I had an ear infection. Only after another er visit 48 hours later was I admitted and given an mri.

    It has been a very slow recovery, but at 35 and having a new baby I am determined. The neck pain took 6 months to go away. I was left with left side weakness. My shoulder & arm being the worse. However, months of physical and vestibular therapy has me back in the gym. My workout routine still cannot contain high impact cardio, but I am weight training and doing balance/core exercises daily. I must ensure my head stays in a neutral position. Progress has been very exciting lately.

    I pray that my VAD has finally healed. I am very anxious to get my results tomorrow. Glad to hear others stories.

    1. I was wondering what exercises they have you doing for your core and weight training. I recently had a VAD and they told me to do low impact cardio and no upper body weight training. I am having trouble finding good core exercises that don’t have you move your head. Are planks safe to do or not recommended?

      Thank you

      1. Jen,

        I’m working with a trainer so some exercises are modified. I am not doing planks. We are using the Bosu ball to improve balance and core strength. I do my squats and arm exercises on it. I’m doing Russian twist with my head in neutral. I’m doing my legs lifts while laying flat. Push ups are modified on bar. I’ve seen fantastic improvement. My balance on the Bosu ball has dramatically improved. All of this has taken 17 months post VAD to achieve.
        But I am encouraged. I hope this helps.

  38. Thank you for this article. I lost a lot of weight 5 years ago due to carbs restriction, unfortunately I gained all the weight back in past two years. I’ve been thinking about going on this lifestyle for some time now, but I have a problem. I have big joints problems (deformation of patella and maybe CFS, docs are not sure yet) and it is impossible for me to work out now that I weight extra 20 kilos. I have also hypo thyroid.. Do you think I have any chance of losing weight without excercise? When I lost weight 5 years ago, I didn’t work out either – I started after losing my weight. But now I just can’t do it. I’ve tried everything except the keto diet. I’m 21 years old now. Thank you for your respond

  39. Hi Kseniya,
    I also had a VAD on the left side, I am an active, young female. It’s a long road but the occupational and physical therapy will help. I also thought I would have progressed faster. It’s just how your body heals.
    It’s been not yet a year and I still have, “tingling, on the left side, and especially in my leg”. It’s sometimes a warm feeling. I also have some weakness in my “left hand”. Really right around my fingers, it’s annoying. Physical therapy will helps! It really dose! Walking as much as you can! The worst thing is the excruciating head pains, “migraines” as they call them. Pain from my lower neck up into my skull. However, I push myself hard these days now, trying to be the old me, sometimes I overdo it and pay the price. This I hope is encouragement to you, because when it first happened to me I could not even drive or walk straight. So best of luck and keep hope!

  40. Hi all, I’m a 27 year old female and had a VAD on the right side about 2 months ago. I just did my follow up MRA and both the dissection and blood clot are healed and gone! I couldn’t be more thankful for such results. However I still have a lot of tingling sensations on my right side. My leg is the worst. I’ve been taking gapapentin to alleviate some of the nerve pain but was curious if anyone else was experiencing similar tingling? Sometimes it gets better and sometimes it gets worse. I have anxiety over it, worrying that it won’t get better. Hope everyone else is well, and staying strong!
    -Ksenia

    1. Hi Ksenia,

      I also had a VAD about 2 months ago. I definitely had one on the left side, and possibly the right side as well (neurologist and radiologist couldn’t agree about the right side). I am a 32 year old female. I have not had a repeat scan of my arteries yet to know how I’m healing, but both of my MRI’s have shown no signs of stroke. I too am still experiencing lingering tingling, for me on the left side, and especially in my leg. I also have some weakness in my left hand. I have just started physical therapy and am hoping that it will help. I originally thought that since I did not have a stroke that I would be back to normal very quickly, but that has not proved to be the case. My symptoms also vary in intensity, sometimes barely noticeable, and other times so bad that I begin to limp from the pain, tingling, and occasional numbness in my leg (usually when I’ve done too much). I feel like it’s a delicate balancing act of moving enough that I’m not getting stiff or pinching a nerve, etc., and then taking it easy and not moving too much. I wish you the best of luck in your recovery!

      Andrea

  41. I had a VAD and stroke Oct 21st 2015. Symptoms were nausea and my left eye and lower head had pressure at 11pm. Tried to get up and left side collapsed. My one real symptom was no balance and left side heavy. My damaged artery was the left one. I was very lucky insurance oked PT and OT which is a whole other subject. One month in therapy and I was walking with a cane. Three weeks later walking with no help. I was working full time @two and a half months( sales inside and outside). One thing that intrigued me was how many times I was asked if I had just been in an accident in the ER. Most have trauma to go with it. I’ve had my 3 and 6 month MRI’s and very little improvement in the dissection area. Worried, I asked my neurlogist @Mayo and she replied the reason I continue to improve is the “cirle of willis” which is a back up reservoir of blood and arteries at the base of the brain. I swim 2-3 times a week, golf and went on two trips. Other than my balance still working on, I was like many of you really tired often. I’d come home after work and be in bed by six but that has gotten better too. The last thing I want to leave all of you is after the first 6-8 weeks my doctor said “you’re going to get to a point where in the past you noticed improvement daily or weekly, now look where you were 1-2 months ago to now and you’ll still see improvement.” Best of luck to all!

    1. Hi Tom,
      My recovery has been very similar to yours. At 33, I couldn’t walk, talk, or swallow following the stroke, but everything has improved and I’m probably at 90-95% of where I was prior. My damage is on the left side and my VAD did not heal. It will be two years at the end of September. It worries me that it didn’t heal but gotta love that Circle of Willis 🙂 Best of luck to you in your recovery. The body is an amazing thing!

    2. I just found this fascinating website and wanted to ask a question because everyone here seems so knowledgeable about this situation!
      On 4/7/15 I woke up and tried to get out of bed..I felt incredibly unbalanced and was unable to stand–the dizziness was so profound that I soon began retching ..
      I managed to get to the stairs by dragging myself on the floor and finally got into a sitting position, where I remained for about 90 minutes. The lack of balance finally wore off and I was able to get up and walk. I felt “wobbly” but continued to improve. I emailed my neurologist whom I see for a separate issue. He brushed it off as nothing and told me if it continued to see my primary, and I went on with life. When I saw him a few weeks ago and went over what happened, he decided I could have had a dissection and scheduled me for an MRA which is supposed to happen in two days–more than 8 weeks post “event.” He also told me that “they don’t do anything about dissections” so it was not a big deal. Having read this blog I have a few questions..
      1) could this have been a dissection without any pain?
      2 ) Could I have gotten better that fast with no lingering symptoms
      3) had it been discovered on time would they have “treated” it somehow?
      4) would anything still be visible on an MRA?
      I am a 55 yr old female in decent health with a physically demanding job . The only thing I can think of that has bothered me since then is that I have been tired–but I work overnights so that could be a red herring! Any comments or info much appreciated!

  42. Anyone have the experience of not being able to return to work after their VAD and stroke? I am 38 years old and had a stroke 7 months ago. I returned to work part-time after my stroke. I am a teacher and am finding it very difficult to walk around my classroom and school, grade papers, help students, and other daily tasks of a teacher. I am exhausted on the days I work. The main symptoms from my stroke are double vision, loss of balance, and loss of coordination. I also have loss of feeling/temperature on my left side. My VAD has not healed and dr’s say it is unlikely it will. I am considering applying for disability but hate the thought of that!

    1. Diana R have you tried occupational or physical therapy ? The dizzyness is uncomfortable almost painful but they expose you to it. This is suppose to rebuild the lost ability to deal? There is technical terms for it…. 🙂 in time it could dose not last as long or feel as bad . The team that they sent me too was some great people.

    2. Hi Diana:

      I had a VAD and three strokes. I retired shortly afterwards and now it is just over 2 years when the strokes happened. I really miss going to work. I was a teacher. Most of my socialising was at work. I very much miss that and being productive. I would not listen to the doctors. Why wouldn’t it heal? It may take longer than the average. But if you are kind to your neck there is no reason why it won’t heal in the long-run. Just stay in there and try to forget about it while being kind to your neck. If there is one thing that I have learned through all this is to never listen to the doctors because they don’t know what they are saying. Most of them have never heard of a VAD and even if they have they don’t know about the healing process. Doctors told me I would always have double vision and not be able to walk after 6 months. Here I am every day making massive improvements. According to them I should not even be alive but I survived the strokes. As I said, just hang in there and stop worrying if you are about your neck. I am just kind to mine and never think of it. Lisa

      1. Yes. Always with me on my affected side. Worse in bad weather. One side of my face as well. If I remember correctly your episode was fairly recent so you will feel much, much better in time. I was told by my neurologist that I am in the 10% who develop post stroke neuropathy type pain. Do what you can to keep as comfortable as possible while your elegant, remarkable brain figures out new ways of dealing with your stroke.

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