Personal VAD & Stroke Stories - Page 4

Hi Chris.  Just came across your website.  It’s amazing how much material is online now compared to 8 years ago when I had my VAD—there was nothing!  Sharon Stone had it shortly after me and it got in the news, then more info. started appearing about it.  I haven’t been online looking for years so am pleasantly surprised to see there is more out there. 

My neurologist here in Kansas City was a complete dickhead, and didn’t know much about dissections.  So I went to the Mayo Clinic after finding a couple white papers written on VAD by a dr. there.  He gave me totally different advice than my KC neuro, so I’ve chosen to live my life on my own terms.  (one said—go live your life, take no precautions, you have nothing to worry about; the other said—you should avoid any extreme exertion to your body; having a child? make sure it’s a C-section; don’t participate in boot-camp like sports; just don’t exert yourself, etc.)

I recovered fully after my VAD, even though I did have a stroke and lost about 40% of my cerebellum.  All fine (never even had PT—pretty much walked away from it).  My left vertebral artery closed off from the dissection, but the right VA has ‘taken over’ and continues to feed my brain stem.  No problems.  Except when I work out.  Sometimes I get the vision aberration and a small headache when I’m working out hard.  I freaked out a couple times and went to the ER when this happened initially, but my (ridiculous) KC neuro (that I hate) said I’m just having migraines.  Thing is, I never had a migraine in my life until this VAD thing and it was causing mini-strokes, which had symptoms just like migraines.  Hard to swallow that’s a coincidence.  Are they really migraines (and why do I only get these when I work out hard), or is it some after-effect from my VAD 8 years ago (maybe bloodflow is already more restricted to my brainstem and when I work out, it’s even more so and it causes low oxygen to go to my occipital lobe, leading to the vision and neuro symptoms); or is it a new dissection rearing up?  Maybe I don’t want to know.

VAD, Stroke, Spontaneous, F53

I am writing this story on behalf of my mother. Last August of 2009, my 53-year old mother and I were out for an 8 mile run one evening. During the run, my mother indicated that her balance seemed to be off but suspected it was related to sinuses. A few hours later, a nightmare would occur that would leave her with symptoms that have affected her life to this day as well as a diagnosis that took 15 months and included 21 tests to determine she suffered from Vertebral Artery Dissection. Here is what happened.

Later that evening almost 3 hours later, my mom had encountered a sudden pain that went directly up her left nostril shooting up her forehead and down the back of her head leaving her with a terrible headache worse than a migraine. She also encountered symptoms of vertigo, numbness in her right leg, constantly blinking in her left eye as well as a slight drupe in her eye.

She immediately contacted our family doctor the next morning. Several tests were performed and all indicated that there was nothing visible wrong with her except the he felt she probably had vertigo. He was slightly puzzled by the other symptoms but did not seem concerned. A few weeks passed, the symptoms persisted forcing her to seek opinions of several neurologists. She was unable to work, drive, and struggled greatly with her balance.

Several tests were conducted by each of the neurologist. Some tests were conducted twice. Our family began to grow increasingly frustrated because no one was able to provide a proper diagnosis. At one point, a neurologist specializing in balancing disorders diagnosis her with that. After seeking several sessions of treatment, the symptoms did not go away except for the vertigo.

At one point, we encountered a neurologist who claimed my mother had conversion disorder and claimed this was all psychologically related. My mother felt hopeless and began to believe that no one would be able to figure out what she experienced that evening. My family including myself always felt strongly that she may have had a stroke and debated several times with the neurologists about this theory. Since the MRI never showed the signs, the doctors believed this did not occur.

Finally in November 2010, we met with a new neurologist who decided to conduct one more test that had never been performed. The test indicated she suffered a stroke and diagnosis her with Vertebral Artery Dissection. The shooting pain she experience showed signs on the test that there was damage to the blood vessel which was a result of the stroke.

My mother has made much progress since the time of the stroke first occurred. Her life has changed dramatically. She is still unable to work, has limitation on driving, struggles with her balance. Her symptoms today still include battling periods of time of feeling fatigue, consistent headaches/migraines, numbness in her left nostril, persistent coldness/numbness in right leg, and periods of blinking occurring. She is on the road to recovery. It is amazing that it took 15 months later, 6 neurologists and 21 tests to figure this out. It was a real life nightmare.

VAD, No Stroke, Spontaneous (but headaches), F35

I am a healthy 35 yr old, wife and mother of 3 children (11, 9, & 4). November 24, 2010, I was diagnosed with a right vertebral artery dissection from c4-c2. I started having right occipital headaches since 2002. I am a sonographer/x-ray tech and consulted with our radiologist who then decided a MRI of the brain needed to be done. The results came back normal. I continued having the right sided headaches which worsened the first of this year. I heard that chiropractic care could help relieve headaches although I was skeptical given some of the patients I had encountered while in the fray field. My supervisor (sonographer) and nurse really spoke highly of what they could do. I started in Feb 2010 with adjustments 3x weekly for 6 weeks, tapering off. I would say the headaches had improved...going from 6days a week to 1-2 days with a headache. One Saturday in Nov I laid on my belly on the bed and placed a pillow underneath my chest. I suddenly had a weird tingling sensation in my head and my whole body just felt weak. I immediately pulled the pillow out from under my chest. I couldn't speak or move. Five minutes later, I came to. The next couple days I just wasn't feeling right. I felt pressure in the back of my head and into the right side of my neck. It wasn't long before I started with vertigo and nausea. I went to the chiropractor that Monday and told him my symptoms. He examined me and my C2 had subluxed. He gave an adjustment and I went home in terrible pain. I couldn't sleep. The next day the vertigo was worse. I went back to the chiropractor on Wednesday because I felt so bad on Tuesday. I saw a different chiropractor in the group and did another adjustment which was not painful. The end of the week went on and the vertigo, pressure and pain was still there. I knew then I needed to see a medical doctor. I went to the urgent care the next Tuesday. The doctor thought this was just vertigo. He did do some tests I think just to please me. An eng and a CT head was done. The EKG was normal and was waiting on the CT results. In the meantime he prescribed antivert and valium for the vertigo. He comes back in and says the CT was not quite normal and they wanted me to have an MRI/MRA Brain/head & neck arteries. The next day I went in for the MRI's. I could hardly stand by this point. My body felt so weak and so much pressure between my ears. My right jaw had started to hurt and burn. I was able to make it through the MRI. Then wheeled straight over to the ED. There my husband and I were told the results.

I was in the hospital for five days over Thanksgiving. On IV HEPARIN and then coumadin. I was told this was not to be taken lightly...this was serious. I was at a great risk for stroke. The neurosurgeon who cared for me in the hospital thought I could be back to work in a week. I had not suffered a stroke which was by God's hand given the chiropractic adjustments twice.

It's been 5 weeks now and I have my good days and bad days. Now I'm hurting on the left side...it's a burning type pain. I hope I haven't dissected the left. Went back to the doctor and had more tests. An x-ray c-spine and an MRI c-spine. No results yet. The pain on the left side is worsening. They did tell me the burning that you feel is the inflammation in the vessels. That would be normal. Dr said take two alleve for 1-2 days. We'll see?! This website has been wonderful...alot of helpful information. I was told i was the third pt in the last several years.. rare.

VAD, Stroke, Spontaneous, F34

I'm a 34 year old married mum of two boys. In Feb 2010 I had a stroke leaving me with hemianopia alexia, in other words my left peripheral is gone. On Nov 2010 I suffered another stroke, thankfully no damage was done this time. both of my strokes were from artery dissections in my neck.

Bi-Lat VAD, No Stroke, Spontaneous, M41

I went to work on 9/3/10 like normal. No headaches or dizziness. Around 2:00am(work days & nights) I felt two big pops on the right side and towards the back of my head. I thought oh boy this is going to be a big headache, as sometimes I get them especially when you're working all night with little sleep. Thinking it was just a headache, I went home and went to bed expecting to wake up in a couple of hours without the pain. Well, that was the first thing to wake me up. Went back to work all night the next night and kept taking motrin thinking it was a tension headache. The next day was Labor Day so I spent the day on the couch with ice, heat, asprin, and motrin.

On 9/6/10 I went back on days, and was feeling a little better but my face, neck, and top of my head felt numb. By that evening, I started really feeling sick, throwing up, dizzy, trouble seeing. I told my wife I was going to the hospital in which she came. CAT scan showed nothing, but the Dr. wanted to do a spinal tap which showed blood.

They transferred by ambulance to a neuro hospital where I spent the next 9 days in I.C.U. I.V. of plavix, and a bunch of other drugs I can't remember including morphine and other pain killers. I was in and out for days. 11 days total in the hospital. Then when I got out on a Friday, I started throwing up blood on Saturday and Sunday. By Monday I couldn't move and they called another ambulance for me. I spent another 9 days in the hospital with a what the doctors called a huge ulcer. But that's a different story. So I spent most of Sept. in the hospital.