Personal VAD & Stroke Stories - Page 9
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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Carotid dissection (but have interviews with VAD'S), Stroke, M56
My name is Steve Boorstein. I am a 56 year-old stroke survivor. My latest book, but first on stroke, is called Different Strokes—about my stroke and recovery from paralysis—and the stories of 20 other survivors, spouses and caregivers, ages 21 and up!
I've been on The View and Martha Stewart, had my own radio show from Times Square, and have been a keynote speaker for Centura Hospital's Bi-Annual stroke case review dinners.
While mine was a carotid dissection, it could have been a VAD, like some of the survivors I interviewed in my book. I'm sharing this with you, because you we all need to help spread the news to help millions. This is not a preachy thing, or is it about trying to grab some spotlight, it's about truth and "real" options, with the goal of stamping out stroke in otherwise healthy people.
My special interests are athletes and active men, women and young adults that have suffered carotid and VAD dissections (artery tears) from sports and physical activity: specifically falls, slams and jerks … and even sex! Like Elizabeth Gates at the Beast.
Fact is, most active people, and athletes, don't know, see, or believe the pre-stroke signs because they are "healthy." But being healthy, or an athlete does not make us immune. In many cases, it makes "us" more prone to dissection and stroke!
I have a fascinating story to share about life, and life after stroke, for survivors, children and caregivers ... I know I can save lives by what I know. Check out this recent TV clip of an interview I did in my hometown of Boulder, and then visit www.survivingstroke.com.
VAD, Stroke, Spontaneous (bronchitis), F34
Mine started with neck pain and headache on my left side, which quickly became so severe I was in tears daily. First visit to the doctor: I was told that I must have pulled a muscle and to take Advil and put ice on my neck. A few days later, I drove myself to the ER, where the doctor admitted he was confounded, but suspected a migraine. Sent me home with migraine meds. A few day later, I was home with my daughter when I started to feel numb around the left side of my mouth. It felt like a dentist's freezing shot about an hour after you get it. I thought it might be related to my "migraine" but within half an hour, the whole left side of my body was pins-and-needles. Not NUMB, just weak and the feeling was very strange. I called an ambulance and my husband to come take care of the baby. I spent hours and hours in the ER with many baffled doctors, who performed many tests and finally a CT scan. They said the CT scan showed nothing , but wanted me to come in the next week for an MRI. I was again sent home. Two days later, I was at home with my family when I felt a headache coming on, so I went to lie down. Within minutes, the pain on the left side of my head and jaw were so intense, I was almost incoherent. I managed to tell my husband to call an ambulance. At the ER, they gave me another CT scan, with dye this time, and AGAIN was told everything was fine. I was again given migraine meds.
The next morning, I got a call from the hospital telling me that I had to come in for an MRI NOW. It was urgent. They'd had a specialist look at my CT scan and he'd seen something. I had my MRI and hour later, was brought into a room, sat down and told I'd had a stroke. They explained to me that I'd had a VAD and what that meant. Treatment was going to be 81mg aspirin and rest.
That was four months ago. Today I've got most of the feeling back in my left side, but if I stand too long, I go numb. Pins-and-needles, really. I'm still not cleared to exercise or lift my daughter (she's 20 months now), and I have a follow-up MRI next week. In the interim, I started having focal seizures on my left side, which confuses the neurologists because the part of my brain that was affected was my brain stem. Seizures are caused my another part of the brain. Puzzling. I had to start taking Tegretol for that.
Like you, I have been treated as a sort of anomoly, which is fine. The more doctors who talk to me, the better they're prepared to recognize it next time, eh?
VAD, Spontaneous (trauma), F43
I am at home recovering from a left sided VAD on 10 Jan 12. I had a fall on 30 Dec which resulted in neck & shoulder stiffness from 31st Dec, I worked on with a severe headache starting on 7th Jan & every increasing focal pain on the left side of my neck. I could not resolve the pain with simple analgesia & felt the need to support my neck at all times. On 10 Jan I went to work, ran around from 7am until 9am began to feel unsteady & a little lightheaded. I work in a hospital & asked one of the nurses to run a quick BP which was fine, went to another ward for a meeting and had a near collapse there.
Docs were great ... I explained that I had had a previous VAD in 2000 @ 34 - I was 90% sure that this could not be another one because my dr had said very little chance of it reoccuring but 10% of me knew that the symptoms were similar, that had scared me a lot since the headaches started. Anyways, CT angiography & MRI s hould the dissection, extracranially & I was started on clexane & warfarin.
I feel like I have lost my sense of smell, I'm not sure if that is a symptom but I cannot smell my food, coffee, fresh laundry, OR my dogs & I never fail to smell those 2! I am still getting a lot of neck pain late afternoons and evenings, none in the am on wakening ... it seems to come on during the day.
I dont know whether I should report this or not. I get my bloods done 3 times a week for INR because my body hates warfarin! My little row of tablets annoy me, I feel vulnerable & I don't know whether stenting should be thought about as I really don't fancy a 3rd one. I have been ever so lucky with my symptoms with minimal neurological deficit, some thickening of my tongue, & some speech problems on this occasion for about 30 mins ... I am left with just pain & this smell thing. Anyone else lose their sense of smell? Any thoughts on stenting?
VAD, Stroke, Spontaneous (work out), M59
I am a 59 year old man husband, father of 2 grown children, in shape, active...had the experience of a lifetime this past August ( 2011)..Making a long story short, after having a a stroke (vertebral arterial dissection) caused by the bleeding and then clotting thrown off to the cerebellum, I spent 4 days in the hospital, and have been recovering ever since, overcoming vertigo like symptoms, and ultimately given the clearance to resume all activities but warned to stay away from engaging the neck area...for obvious reasons....just had a 6 month check up with my Neurosurgeon ( dr Jefferey Katz- North Shore Univ. Hospital- Manhasset, N.Y.)...had MRI/ MRA w/ contrast.....after reading, his assessment was as follows ( my interpretation):
Good news: other artery (good one), taking blood flow vibrantly and in such a way that the brain gets the flow it needs. Not so good news: The damaged arterial wall not yet healed- as a result, not functioning from a flow perspective (no Flow).
Dr. Katz said however, that he is not surprised that after 6 months the healing has not yet happened( artery being open and functioning that is). Dr. Katz went on to say that in another 6 months, we should schedule the same tests and we will then see what is happening. There is a possibility according to him that the artery may never heal( function as a flow through artery). That said, he expects me to be fine with the other one doing the work that it is doing now. In essence, you only need 1 of the 2 vertebral arteries to move the blood to the brain.
The downside is if I damage the other one, it could be big trouble. Therefore, I must continue to stay away from activities that would put a strain on the neck area. Ideally, if the damaged artery does become open and heals, that would be the optimum outlook. Safety net intact.
Tonight will be my last dose of coumadin, and my first daily dose of baby aspirin, that I must stay on indefinitely along with the simvastatin. I'm somewhat disappointed but at the same time hopeful that over the next year or so the damn thing heals. Otherwise, I'll be flying with no net..
With respect, can you give me your opinion as to whether or not the damaged ( closed) artery will eventually open....please feel free to contact me ..
VAD, Stroke, Spontaneous, M58
I was completely healthy one day and the next day I suffered from a VAD. No history of high cholesterol, high blood pressure, never smoked, monitored my weight and exercised daily. Then one night, almost 5 months ago, I awoke a couldn't feel my right side. Life has been hell since then. Fortunately, my wife was there and has always been there for me since.
I have since regained the use of my right arm, my brain is clearing up, but my right leg and foot are slow in coming back.
I am wondering whether any one out there has had a similar experience and how long can I expect to wait for my right leg and foot to return?
VAD, Stroke, Spontaneous (after chiropractic adjustment), F29
In August 2011 I suffered a left VAD at the chiropractor's office. I had been seeing the chiropractor for a few months for headaches. My headaches were much better but I was still seeing him once a month to keep it that way. He adjusted my neck and immediately the room was spinning and I was more nauseated than I had ever been in my life! I told the chiropractor that something was not right. He blew it off saying that I must have eaten something bad for lunch.
My neck hurt and I could barely hold my head up. I was embarrassed to get sick in front of him and asked to use the restroom. He pointed me in that direction and as I walked there I ran right into the door. I sat on the bathroom floor scared and alone for what seemed like forever. I couldn't even think to call 911 but I was able to call my husband. He could tell by the tone in my voice and the way I was talking that something serious was wrong. He didn't know the name or address of the chiropractor's office so he called the office and told the chiropractor (who was sitting at his desk while I was on the floor in the bathroom) to call an ambulance. The chiropractor continued to blow it off acting like nothing was wrong. My husband had to get nasty with the chiropractor before he called an ambulance, but he finally did.
By the time the paramedics arrived I wasn't able to feel my hands, see or walk. It was the scariest thing I have ever experienced. At the hospital I was put through many tests/scans and was diagnosed with a VAD and a stroke in the cerebellum that has left me with balance/coordination issues, especially when I am tired. I spent 2 days in the nuero IO to begin anticoagulant therapy. I was out of work for a month. My husband had to take time off work because I was too weak to care for our 2 young children.
I recently had a CTA done and was told by my the neurologist that my artery has healed...yay! I feel so blessed to still be here and hope that no one else has to ever go through this!!
VAD, Spontaneous, F27
I am 27 years old and on January 30th, 2012 I was running on a treadmill at a local military gym. I was next to a friend, and she wanted to show me a picture on her cell. When I looked to my right to see her phone, an acute pain shot through the left side of my neck. It felt like my neck was on fire. My friend convinced me it was nothing more than me not stretching properly, so I pushed myself through the pain, and finished running my three miles.
I fell asleep when I came home, and woke up with my left arm being completely numb. It lasted for twenty minutes and then shifted to my right arm. I figured I had pulled a muscle in my neck so my arms were being affected by the pulled muscle. When I was driving to get my kids from preschool, my vision began to blur. By the time I made it home, my left eye was completely blacked out.
My friend came and drove me to the ER where I was told I was having nothing more than a migraine. I was taken to get a c.t. scan which came back inconclusive. I was kept overnight for observation and to wait for an mri come morning. After my mri, a nurse came in and started Heparin. When they finally came back in the room, I was told an ambulance was coming to transport me to a hospital in Boston because I needed to be seen by a neurologist.
Luckily, I didn't have a stroke, but was showing many symptoms of one. Once I got to Boston, I was assured that I didn't need surgery. I was put on a Lovonox bridge to Coumadin for six months to prevent clots while the dissection is healing. I cannot do any activity that raises my blood pressure/heart rate. Any medical person who came into my room was shocked to know my age. I was told by many doctors and nurses that this in patients my age is as rare as being struck by lightning.
VAD, Stroke, Spontaneous, M32
I had bronchitis and coughed so hard I almost passed out. A couple days later I had a severe headache and neck pain. The emergency room thought it was a migraine. A couple days later I woke up and couldn't stand and my vision was all messed up. My right eye was pointing towards the ground and I couldn't focus. They gave me a MRI and confirmed that I had a stroke. They then did a ct scan and said I had a vertebral artery dissection on my left side.
I am on 6 month Coumadin therapy and then will be on life long daily aspirin. It has been 4 months. I have been experiencing anxiety about having another stroke and reinjuring my artery. I have been having constant neck pain and am starting to worry that the pain is permanent.
VAD, Stroke, Spontaneous (Chiropracter visit), F26
I had been suffering from neck stiffness and migraines so i went to my chiropracter which now I've learned is not a good idea for your neck. I suffered a stroke while at my chiropracter and was taking by ambulance to the hospital. I am 26 years old with 2 small kids which I can't take care of by myself now. I am still recovering from my stroke in February 2012. It's amazing the little things (and big) that you can't do after losing some function on you left side. I was lucky, I have my speach and can walk with a cane. Typing this story however, took me forever and drives my crazy that my fingers don't work like they used to.
VAD, Stroke, Spontaneous, F38
I suddenly developed a very "stiff" neck about 4 days after my hysterectomy in January. Then, the headaches came, and I became ill with a terrible migraine. I thought the headaches/migraines were due to my neck pain, however after being prescribed Cyclobenzaprene (muscle relaxant for my neck), my improvement was short-lived. On Feb. 1, I had no coordination on my left side! My left hand was weak, and I leaned to the left. I could not walk in a straight line (I veered to the left). I had a "tingly" sensation on the left side of my scalp and face.
My boyfriend took me to our hospital, where I was admitted to ER. After a CT Scan, I was told that it appeared that I had a VAD. I underwent an MRI a few hours later. Unfortunately, later that afternoon, my neurologist arrived and said it appeared that I had Vasculitis, rather than VAD. That was a huge misdiagnosis. The worst part about it, was that I was put on a very high dose of Prednisone (75 mg. daily) and Coumadin!
I underwent an angiogram on March 5, approximately one month later. Immediately after the procedure, I was admitted to ICU, where I remained for a week! I did indeed have bilateral VAD, and I now also had 4 inch clots in each VA. My left VA was totally occluded. My neck pain is moderate to excruciating, every day.
VAD, Bi-Lateral, Spontaneous, M54
I flew home from a meeting in London on a short, 1 hour flight during which I dozed off. Went to bed, felt ill during the night and was up several times. Eventually fell back to sleep and woke up with the worst headache I have ever had. It was very localized behind my left ear. I phoned the UK's 24hr National Health Service line for advice. I also developed severe sweating, it was literally pouring off me and I thought I might have contracted some sort of virus. While they were doing their interview over the phone my left arm went numb, only for about 30 secs. At this point they told me to unlock my door and wait for an ambulance, which arrived in less than 10 minutes. I then was admitted to hospital and had various CAT and MRI scans. After several days in the acute stroke unit of the local hospital I was placed on a course of anti-coagulants (Warfarin or Coumadin in the US). I have been on these now for a month. I have not had any recurrence of the symptoms, at least not the severity that I experienced before being admitted.
I do still have mild headaches and continuing neck pain but nothing else apart from some mild side effects from the Warfarin. I am lucky, in that I am able to carry on much as before although I am acutely aware that the prognosis for bilateral VAD is not as promising as for a single VAD and that there is a likelihood that it might reoccur. Having said that, I am back at work, I exercise regularly and travel a lot and occasionally I forget to take things easy.
Reading about former Australian International Rugby Captain, Michael Lynagh who recently had a stroke caused by VAD has brought home to me how lucky I was, and that I should not push my luck!
VAD, Spontaneous, F37
I am 37 year old female and I teach sewing for work. While showing someone how to use a needle threader on a computerized machine I managed to have a vertebral artery dissection. For the past year ( before this incident) I had felt an abnormal amount of emotional stress and knew that it was affecting my body somehow. There were a few times when I felt like I should check myself into the hospital or see my family doctor but did not really know how to explain the way I had been feeling. The afternoon of the incident I was feeling better with a sense of relief in my personal life so I did not take the incident seriously right away. While I was bending over to look at the machine needle threader and holding one half of it down while the client was struggling with the other.( She had just had surgery on her hand and was one-handed in this venture) So I was helping her while in a very uncomfortable craned position. I went to straighten my back and neck (stretching) between threading each time. Upon the last time i stood up, my sight in my left eye was blurred; As if there were fish darting around and i was looking through water. This lasted for 15 minutes or so while I just sat in the kitchen and prayed. When my sight returned I was thankful but had a horrible pain in my neck. I thought for sure that I just gave myself whiplash. I felt temporary nausea and vertigo but had a busy day that Friday and went back to work. I was exhausted that night in comparison to the great energy that I had been feeling for the few days prior. My neck was very stiff and I just happily suffered through (I even went for a little jog on Monday despite the pain) until the Wednesday after when I had some really bad news. I immediately felt the pain more than ever and proceeded to have a panic attack while trying to get my work done in preparation for teaching a class. 2 days later (a week after the incident) I was at work using the computer. using the computer became very difficult for me...starting getting very agitated (as I am starting to feel now too) I stopped to call a doctor who worked in the ER and told him everything. He guessed what the problem was...I went straight to the hospital and after some tests (ct scan) they found the dissection and an MRI confirmed I had not suffered a stroke.
After my overnight stay in the hospital I came home depressed and full of anxiety. Laying down with my head flat on the bed was the most comforting and after a couple days of that I managed to have the worst sinus infection. My face swelled up and I had to take medication. I also found out that I had a pin worm infection and I would like to know if that has had an effect or if it could have anything to do with my condition. I am on medicine for that now. Frequent migraines (especially in the first week), electrical spark feelings in my head and a consistent feeling of a thorn in my neck. Sometimes it is worse (when I am under stress) and it starts to feel like a knife. Now I have a constant pain along my vertebrae (my neck right below my skull, and the middle of my back) My neck is cracking all on its own when I move it just a little; it feels out of place and I hope that my next MRI give me some answers for that too. It has been hard to fulfill my job requirements and I probably push myself too much. I am a single mother and I cannot afford to stop working. I did try acupuncture at the beginning and it seemed to help...I just can't afford to keep going.
I have been on 81 mg of aspirin twice a day for 3 months. Due to get follow up tests in a week. The Aspirin is upsetting my stomach and I would like a more natural way of therapy. I am almost vegetarian ( I eat a lot of raw green vegetables) and find that it doesn't mix well with Aspirin. I would like to understand why this has happened and if there is something that I can change in my diet to help. Most of all, I would like to trust that things will be okay. That the doctors will help, my body will heal and I will grow from this experience. Maybe trusting in God is the answer.
VAD, Stroke, Spontaneous, F37
I am 37 and out of the blue had a stroke. I was an avid runner and crossfitter. I also went to a personal trainer. I treated exercise as my part time job. I had my stroke at 3 am and was medflighted to Boston where they removed the clots and found the vd. I had the stroke on April 7 and left the hospital on April 12 and left rehab on 27th. I have right sided paralysis and deafness in my right ear too. I am right handed so it stinks. I am in outpatient therapy and slowly getting things back. I guess I was in the best shape to have a stroke...ugh
VAD, Stroke, Spontaneous (sudden head movement), M28
First of all , Thanks for the forum .
Normally healthy, while at hospital with my new born baby in hand I turned my head so fast to pick the falling pillow. This caused a vertebral artery dissection. Suddenly lost eye sight, started mumbling, lost left side strength and collapsed in the couch near my wife's bed. My wife pressed emergency button , the nurses came and informed senior neurologist surgeon about the case. The junior doctors didn't know what to do. I could see everything vaguely happening in front of me. Vomited in between this three times. The doctor told me to lift my left leg and hand, Simply I couldn't . He told in my ears they suspect a stroke. Gave me some heparin , I woke up the next day on the bed with several instruments connected to my body. Didn't know what was going around . I was informed that I had a stroke and then was in hospital for two weeks in intensive care unit. I did rehabilitation for two months. Continued doing my PhD after rehabilitation.
Now in good condition except some problems
I am thankful to doctors, family and other people who prayed for me and the almighty power for the reason you me and we are here n earth
Have got headache, numbness sometimes on the left side of brain , poor concentration and gets anxiety soon .
Hope is a good thing, No good things ever dies.
VAD, Stroke, Spontaneous, F38
On April 6, 2012, I got up off the couch and had some strange neck pain. I figured I must have been sitting a little awkward and just irritated my neck. I lived off of advil and ibuprofen for the next few days/weeks for the pain in my neck and right arm (felt like it was asleep). I had an appointment with my Rheumatologist on April 10th and asked him to take a look. He prescribed a steroid pack with a follow up neck x-ray and MRI if this didn’t work. The steroid pack did not work and since I did not think this was related to my Ankylosing Spondylitis (AS), I got an appointment with my sports medicine Dr. He did a neck x-ray and ordered the MRI. I was not able to get scheduled for the MRI until Friday 4/20/12. I went in for the MRI and had my first incident later that day. I was driving to my son’s school and got an excruciating headache, arm pain and just the overall feeling that something was not right. I pulled over and called 911. My whole body ended up seizing, clenched fists and slurred speech. The EMT’s got me calmed down and took me to the hospital. I got a CT scan and x-ray, but nothing definitive was showing up. I was released about 4 hours later… still pretty wobbly, but feeling much better. A panic attack was the basic diagnosis, but take an aspirin just in case.
Two days later, I was sitting on the couch and got a severe headache and lost the vision on my right side. I was just annoyed that this was back, but my husband knew something was wrong. At that same time, our Dr. called with the results of the MRI saying that I had a vertebral artery dissection and that we needed to make sure the ER docs were told that immediately. He got our kids in the hands of our neighbor and rushed me to the ER that I had been at two days earlier. At this point, I was having a stroke. The neurologist and ER doc were arguing whether to give me a TPA. Because we got there so quickly, it was an option for me. My husband got a quick education and authorized the TPA.
I was extremely lucky and only have minor visual issues that will hopefully get better in the next year. Typical to most of the stories, I am now on the Coumadin “diet” with flexeril and some pain meds as needed. After following up with a new Neurologist, I was told that people with Ankylosing Spondylitis (AS) have been known to have thinner arterial walls. I have not been able to find much research on VAD and AS, but have seen some information on AS and Aortic dissections.
VAD, Spontaneous (carotid dissection in the past), M46
Three days before Christmas I was with my daughter driving home from a mall. I felt a pain on the back left of my head. The, what I termed, an episode lasted about a minute. After I stopped feeling the pain I developed an tremendously painful headache that lasted for days. I did go see my provider and he ordered a CTA the day after Christmas it was inconclusive. The headache never got better and on the second of January we were out when I felt the same feeling coming on but this time with a severe pain about mid C spine. By the time we got home my head was killing me and the next thing I knew I was on the floor and couldn't move, my wife called 911 and I was taken to the ED at BAMC in San Antonio.
The folks there did what they could to relieve the pain, another inconclusive CT and I was admitted. The next morning I did have a MRI that showed the left VAD but it also showed my right vertebral artery was none existent I guess since birth. It also showed a healed right carotid dissection that I never knew about. The next six days in the hospital were without a doubt the worse six days of my life. Starting with the shots of Lovanox and the coumadin it was a miserable time.
I went home taking 14 different meds and was taking one when I entered the hospital. The next couple of months were hard and long, INR checks weekly, changing meds weekly, caused so much nausea that I never thought would go away. It's been 6 months now and I'm still not healed but am making progress weekly.
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