Personal VAD & Stroke Stories - Page 6
These are just some of the personal stories people have sent to me since April 2008. There are many more but problems with email accounts mean I don't have emails previous to that.
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VAD, Stroke, Spontaneous, M38
I didn't know this site existed until now!!! I had a VAD and stroke 3 years ago--Dec 07--when I was 38. The event was spontaneous. The only thing the neurologists could link it to was that I had just finished weeks of house painting. I had no idea this was a possible cause, but they say it causes your neck to be "kinked" for long periods.
When I had the stroke, I got a sudden headache in the back of my neck, then I felt lightheaded. I tried to eat something but found I couldn't swallow and my speech got very slurry. A friend called 911 and after 30 seconds of examining me, the paramedics said they thought I had a stroke. They asked to take me to a hospital 5 miles further away than the closest one because they had a stroke center there. That was a very good idea because my symptoms got worse. The doctors met me at the ER door and were great. They honed right in on the problem.
It turned out the VAD was in my right artery in the top of my neck near the pons, which led to the stroke. I had temporary paresis and was in ICU for a few days. The stroke primarily affected the nerve that regulates gag reflex and swallowing. I was on heparin and then coumadin therapy for 6 months but the blockage never cleared.
My recovery was fast and has been very close to complete. I sometimes swallow the wrong way (aspirate) but that is rare. Otherwise, the only time I get some residual is if I am sick, like the flu, or if I have more than 2 alcoholic drinks. My neurologist said that is a normal response for the brain. They also say symptoms might come back when I get older. I think I was very fortunate that I was taken to the right hospital with vascular neurologists who knew what to look for.
My doctors gave me some advice when I was discharged--as numerous other patients can attest they said never get chiropractic manipulation. They also said to avoid roller coasters and even strenuous weight training because those things shock and strain the neck and put pressure on arteries. Who would have thought?
VAD, Stroke, Spontaneous, F49
I am a very healthy individual...run, ski, bike...etc. I have regular health checkups with an Internist, and have never seen a chiropractor. My adventure began suddenly as I was sitting in a class taking notes. I had been in class feeling fine, for over an hour when suddenly as if someone had flipped a switch, I experienced incapacitating vertigo. I couldn't stand up or walk as I had no sense of balance. Uncontrollable nausea and vomiting soon followed.
There were several paramedics and EMTs at this class so my pulse and blood pressure were checked and normal. I had nystagmus but no other notable signs or symptoms. Fortunately, my SO was with me and eventually helped me to our vehicle then home. I spent the weekend in bed with waxing and waning symptoms.
I also began experiencing a left-sided, occipital/cerebellar/ left ear head ache. In spite of these symptoms, by Monday morning, I felt improved enough to go to work....big mistake! By mid morning, the symptoms all came back with a vengeance, and I finally sought medical attention.
My PCP thought it was a bad case of vertigo and prescribed valium. At home, I rested overnight then called to request further workup since the symptoms were worsening. At that time an MRI of my head was done which showed probable left cerebellar infarcts. Subsequent CT-angio was performed from which the neuro-radiologists made the diagnosis of vertebral artery dissection with ischemic strokes to the left cerebellum and brain stem, no hemorrhage was identified.
I was admitted to the hospital for 5 days on a heparin drip and transitioned to coumadin. Once admitted and therapy initiated, my symptoms improved dramatically. Other symptoms that developed after the initial vertigo and nausea were: Horner's syndrome on my left side; poor balance and coordination while walking, with a tendency to fall to the left; my right face and trunk became insensate to temperature and pain; and my headache persisted but was sporadic an d very painful in the same left-sided distribution.
It has been almost 2 weeks since the onset of all this, and I am doing remarkably well. The residual deficits are minimal and getting better daily. I continue to have daily headaches which are responsive to tylenol. New medications for me are: Coumadin for 3-6 months and Zocor. My oral contraceptives were discontinued. I will not be skiing in Colorado, or playing golf in Florida this winter.
All in all, I am thankful to be alive and functioning well, so I will happily forgo these activities until it is safe. It is a small price to pay. If I were to impart any advice to others from this experience, I would say....go to the Emergency Room if similar symptoms occur or if you have any neurological signs that could even remotely be considered a stroke. Time is of the essence and the ER physician will most likely have a higher level of suspicion for VAD than a clinic physician. Do not wait.
VAD, Spontaneous (stiff neck), F26
I suffered from a VAD 2 And a half weeks ago. I had a stiff neck for a little bit over 2 weeks, it was actually just getting better-or so I thought.
It was Friday around 11pm and I was washing my face, when I dried it, I suddenly became really dizzy, I felt really hot and suddenly I felt a burning sensation through my left jaw that went right up to my head. I became nausea and I went to the bathroom and a started to throw up, it was right after that that I saw pitch black and all of my left body went numb.
My parents dragged me to a chair and I noticed that I couldn't swallow. I regained my sight back, but I had vertigo. I was taken to the ER, and the first doctor thought I had some kind of allergic reaction, or that I was actually faking my symptoms.
I was talking as if I just came out of a dentist appointment because I couldn't move my left side, but I was able to tell the nurses all the symptoms, and all the meds that I had taken that day, since I had rinoamihdalitis.
Another doctor was called in and he immediately said it was a cerebellum problem. I was taken to another hospital where a neurologist was waiting for me . I had a scan done and thank God, everything was fine.... no stroke.
By then it was 3 am, and the doctor asked for an angiogram to be taken at 5am, so that I would be able to rest, which I didn't because I was throwing up all the time. I got the angiogram and the doctor told me I had suffered a left VAD, and it was actually a miracle because I didn't have a stroke and all my body movements were normal. I just had problems with my tongue, I couldn't control my swallowing all the time. I was in the ICU for 4 days and 3 days in a normal care room. I was on injected blood thinners for 14 days, and now I'm on warfarin. It has been by far the most terrifying experience of my life.
The doctor says I'll be able to go back to work in 2-3 more weeks, and that pretty much I'll have a normal life. He also mentioned re-occurrence is a low probability. The doctor believes this happened because of my stiff neck, he thinks that when the muscle contracted, the artery was also contracted, and when it started to let go, the artery was hurt, but the breaking point was that day, when I turned my head down to dry it .
I'm still scared though, and I'm also scared on how this might affect a pregnancy later on. I feel very grateful to God because the doctor immediately knew what was going on, and I received treatment right away. Now I feel good, just a bit tired from time to time, a little pain neck and eventual minor headaches
VAD, Stroke, F28
Just wanted to say thank you for putting this site together. I'm 28 years old and had a stroke in September. None of the doctors at the hospital I was taken to could figure out what happened but after going to a neurologist in NYC it was determined that I had a dissection in my vertebral artery. I've only heard of a few people in their 20s who have had strokes and no sites ever have info about these dissections. Nice to find a place where other people have been through this.
VAD, Stroke, Spontaneous (but heavy lifting), M42
On February 1st 2011 my wife and I walked out together from work and proceeded to our vehicles in the parking lot. I noticed that she walked ahead of me and I felt like my legs were in mud and when I finally got to my vehicle I opened it and took the snow brush out and went over to clean her vehicle first. As I started from the back and got to the front I began feeling if I was leaning to one side and stopped briefly as I was confused with the feeling and than noticed my vision was getting blurry. I thought that maybe it was from the bitter wind and cold and went back to brushing and scraping and it began to worsen to the point that my eyes were crossing.
My wife immediately got out of the car and asked me what was wrong at which I explained I did not know what was happening and told her what was going on. She helped me get into the car. Once I was out of the cold to my horror my symptoms did not improve but was the same if not a bit worse. She brought me to the ER at the local hospital.
While there they ran some tests and the ER doctor thought that I was experiencing Vertigo symptoms from a possible sinus infection. The only thing that kept me from getting discharged that evening was that he could not understand why my eyes had crossed. The next day they did an CT Scan and an MRI and than finally a CT scan with Contrast.
To my horror they found that I had a stroke caused by a VAD. They started me on a Heparin drip and told me that I had a good chance of going home later that week most likely on Saturday continuing my treatment on Coumadin. Thursday evening on 2/3/11 the dizzy spells returned and they immediately had me go down for another CT scan that showed nothing had changed.
After my Boss and a co-worker had left at the end of visiting hours I got up to go brush my teeth before going to sleep. All of s sudden my whole right side felt like someone poured ice cold liquid on it from the inside and it began to go numb immediately I had just enough strength and alertness to get back to the bed to press the nurse help button at which no one came initially. I began to yell for help and to say that I was having a stroke and that I was in trouble. It felt like a lifetime but someone finally showed up and than she came back with a bunch of nurses and it was mass chaos. They finally managed to move me to a stretcher and took me down for a CT scan and than down to a surgery room. There I pleaded for them to call my wife at which they finally complied. At this point I could not longer form any words or lift my right arm or right leg.
When my wife arrived she was devastated and lost it briefly but held together for me. I began to lose it and to continue to panic in horror in disbelief that this was happening like someone unplugged some of the wiring in my head. By the time 11:00 - 11:30 came around I could no longer feel anything on my right side from head to toe. They gave me Ativan to calm me down because I was still shaking on my left side uncontrollably. Than the miracle began.
As midnight approached I started to feel my right hand fingers, and toes coming back to life. by 12:30 - 1:00 A.M. my feelings on the right side was just about fully recovered. They finally transported me to Mass General Hospital in Boston, MA on 2/4/2011 at 4P.M. I had another CT scan with contrast done there the next day that revealed that I had blockage created from the original dissection that went up further into the main artery leading to my cerebellum thus blocking it and causing the 2nd stroke.
I remained there for a week recovering and remained on the Heparin and than was placed on the louvonox shots for 2 days thereafter and was discharged on 2/9/2011. I was hospitalized locally 2 more times on 2/10/ - 2/12/2011 and than again on 2/13 - 2/16/2011 for residual symptoms from the stroke, or reaction to medications or from anxiety! Needless to say that i thank god everyday for giving me a 2nd chance to be neurological and nerve damage free.
I started back to work 4 hours a day for two days this past Tuesday & Wed 3/1- 3/2 exactly 1 month removed from the nightmare that started in Feb. and completed my first 8+ hour day today and have driven twice with my wife in the car with me as I take my slow recovery one day at a time!
I still don't feel 100%. My head still gets really tired and a bit woozy and my eyes are not spot on but probably 85 - 90%. The Dr's think I will make a full recovery as I will have a follow up CT scan with Contrast in a couple of months from now in Boston to insure that everything looks good and that the dissection is continuing to heal! Who knows maybe I'll be able to get off the Coumadin in the near future.
One thing is for sure is that I may never pick up anything over 100 lbs or ever shovel snow again but that is insignificant when I consider just how fortunate I am especially in reading all the sad and tragic cases where many people were not as fortunate as I have been. God bless to you all in your ongoing recovery and fight against this common foe!
VAD (twice), TIA, Spontaneous, F40
I am writing to you because I found your website. I had a VAD in 2008 where I had extreme neck pain (unable to turn head) followed by a TIA a few days later and then continual headaches. They ended up find a dissection in the left vertebral artery from C7 to C4-5. I also had a large blood clot. There was no damage from the TIA. I was put in the hospital with heparin and then continued with Warfarin for 6 months. I had a repeat MRI at that time, and everything was flowing well.
Well…..January this year I started having some neck pain. Then, the middle of January I had what I thought was another TIA. We were living in Bali, Indonesia doing mission work. I found some complications with my travel insurance (medical insurance….we are from Australia) because they said it was a pre-existing condition and would not cover. So, the neurologist at the clinic there did a CT scan to make sure there wasn’t any bleeding. Then she put me on low molecular weight heparin injections followed by Warfarin. Once my INR was to 2.0 she allowed me to fly back to Australia (2 weeks later). When I arrived here, my general doctor thought I had a migraine with neurological symptoms (The TIA was with numbing of thumb, then fingers, then nose and tongue. I then could not find my words to speak. My vision out to the left all bounced….I was not seeing anything, just the actual vision bouncing on the left.). He was able to get me back into the neurologist I had in 2008. I was having (and am having) a lot of pain in my neck that goes right up behind my ear). He also felt it was migraine, but ordered a MRI. During the MRI they came in to say they decided to add dye and were going to do a MRA to see the neck vessels again.
Well………..I just received the results. I have another dissection in the same artery. There shows “moderately severe narrowing of the vessel” and also an “acute hyperintensity hematoma.” The neurologist was reading this report for the first time as we sat there. You could tell he was very confused by the results! It was as if he did not want to believe them. He ended up ordering A LOT of blood work and put me on Plavix. I am to see him in 3 weeks.
How often does this happen a second time? How serious is it now? We are supposed to return to Indonesia when this has healed, but my general doctor feels this is not a good idea. He said there is not enough history to know what this will mean in the future. What do you think? Also…does this mean the artery will be more “weakened” now that his has happened a second time? I am having so much pain in my neck that travels right up behind my ear. It is quite a sharp and at times burning pain. Sometimes it radiates down my arm or in to my collar bone. I am also seeing a neurosurgeon right now because I do have a loss of lordosis in my neck. When they thought that everything was a migraine, the doctors wondered if my cervical spine was causing all the neck pain.
So, I am having another MRI for the cervical spine on Tuesday. Well……….that is my story right now. I would love to hear some feedback. We are originally from the States/Canada but have become Australian citizens (we lived here for 6 years before going to Indonesia last year). We do not intend to return to the States, but our home is here in Australia. However, we do have concern on whether we should return to Indonesia.
VAD, Spontaneous (coughing hard), F32
I have a history of headaches/migraines. But I knew the pain I was having on the left side of my neck and head was out of the ordinary! I suffered with extreme pain for over a month before I was diagnosed with VAD.
After 2 trips to the ER, several doctor's appts, MRI, CAT scans and angiograms, I was diagnosed. My neurosurgeon put me on Plavix 75mg and aspirin 325mg per day. It was too risky to place a stent in the artery. Last week, I had a follow-up CAT scan and it showed that the artery healed on its own. I am so fortunate not to have had surgery. I want to stress to people with a similar case that just because you are young, you shouldn't allow doctors to blow you off and not check for all possible diagnosis. I could have died if it weren't for the pain and being persistent till I found the answer. The neurosurgeon believe that the dissection was from coughing too hard while I had bronchitis.
VAD, Stroke, Spontaneous (during 5K run), F50
In August 2008 at the age of 47, while finishing up mile 3 during a 5k run, I had a VAD with stroke and Wallenberg syndrome. The symptoms were quick onset of vertigo, vomiting, nystagmus, loss of voice, and inability to walk.
I was misdiagnosed in the hospital for 1 1/2 weeks. They were treating me for MS and what they thought could be a brain tumor. By the third MRI, they found the VAD on the right and diagnosed the stroke with Wallenberg syndrome. I spent two weeks in the hospital with another two weeks at a rehab center learning to walk and balance myself again.
t took two months to regain my strength. I am left with left sided temperature sensation loss and balances issues, headaches, and some numbness. I was told that after two months whatever residual symptoms I have would not go away. I still work full time, take baby aspirin, but never feel as good as I did prior to that day.
VAD, Stroke, Spontaneous, F39
I am a otherwise healthy mom of three children (2, 5, and 7 year olds). Actually, I thought really healthy. I love to exercise and run 30 miles per week and of course, eat all of my fruits and veggies.
Exactly 9 days ago I was dressed and ready to go to work and was walking to my car when the world flipped on it's side and I could not stand and had severe nausea. I couldn't walk but crawled into the house to lay near the toilet. This was immediately followed by left occipital scalp pain which radiated into my left cheek and nostril. Luckily, our nanny was here and asked what she could do. Not thinking anything was really wrong I had her call my mom who lives close by. My mom came and saw me on the flora and helped me to bed thinking I had the flu.
I thought it was weird since I had felt totally fine the minute before but who argues with mom. Eight hours later headache and dizziness were better but not gone but not incapacitating. I am a dermatologist and my husband is a orthopedic surgeon and neither of us thought stroke - flee, vertigo, migraine (I'd never had one before), brain tumor, MS - but stroke never crossed our minds because after all I am 39 and in perfect health.
I went to work the next day but still had very transient but distinct episodes of dizziness - not incapacitating so I didn't say anything to anyone for 48 hrs when an ENT friend ordered an MRI and the radiologist called me before I got home and said I had had multiple l sided cerebral infarcts. It took me a few minutes to grasp then the phone calls to physician friends started in earnest - my husband was now out of town on a business trip and was calling his colleagues from afar.
I was told to get to ER for CTA to rule out dissections. 2 hours later I was being poked and prodded and getting ready to start IV heparin in the neuro ICU for bilateral vertebral artery dissections (C7-C3 on left and C5-C3 on right). Placed on standard stroke protocol with subsequent MRA to further evaluate the dissections, ECHO of the heart and every blood test to look for coagulopathy.
So far everything else is normal. I was release after 5 days on coumadin and lipitor (cholesterol 200) and have been home for 3 days. Still occasionally dizzy and more tired than usual but overall doing great. I walked 3 miles on treadmill yesterday and today (very slowly) and can feel it. A bit of left sided headache which made me take pause and resting helps. Follow-up MRI in 1,3 and 6 months to monitor dissections and hopefully off coumadin in 6 months.
The most worrisome part is "why". It's hard to avoid something when the reasons are unknown. I've had no trauma, chiropractor work, yoga, etc. I'm my own neck cracker/massager and won't do that anymore. It is hard to get an answer on returning to activities because no one has a good explanation into what caused it. Oh well, it may remain a mystery and while I will be thinking about this hard for awhile, I feel truly blessed to be doing so well. It was cathartic to read everyone's stories - thank you to everyone who shared and good luck to everyone!!!!!
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