Personal VAD & Stroke Stories - Page 14
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.
FORUM: Visit the new VAD Chat Forum (started 11/21/09) to discuss VAD, ask questions, and help others.
VAD, Stroke, Spontaneous, M33
Vertebral artery dissection which lead to cerebellar stroke. Had a typical presentation in retrospect, neck pain, vertigo etc. Fought through the symptoms for 3-4 days before presenting to the ED. Had lumbar puncture for rule out meningitis in the ED, negative. Had a negative CT scan. Finally MRI showed cerebellar stroke.
Luckily symptoms of dizziness, nausea, neck pain and vomiting were all I had. Discharged from hospital 2 days later. Went back to work, only to experience recurring phenomenon of intermittent dizziness, nausea, and vomiting. This was linked to migraine physiology, put on migraine prophylaxis. Took anti coagulation for 6 months, follow up scan showed that no healing occurred. Asymptomatic currently.
This hit me out of the blue as a previously healthy young person, no risk factors. If you or somebody you know is suffering through this, best news is that this entity in general has a relatively benign natural history. A stroke in your cerebellum is much better than in your cerebrum. But being helpless and diagnosed with such a rare condition where the treatment is not proven (aspirin vs anti-coagulation) is scaring. This experience has given me perspective on life, appreciate the ones you love a little more. Life is fragile. Thank God for everyday you wake up normal.
VAD, Stroke, Spontaneous (vomiting), F31
Three months ago I had a right vertebral artery dissection. I was at home when I began to get sick. Myself, my 3 yr old, and my boyfriend were all sick from what we thought could have been food poisoning. I asked my boyfriend to take me to the hospital as I could not stop vomiting. It lasted for over 12 hrs late into the night I felt so dehydrated I got up to get water and fell in the kitchen. I felt stuck to the ground and pulled myself up to try and make it to the couch to my phone to call an ambulance. I had hot and cold sweats.
I was rushed to a nearby hospital that said I must have a stomach bug. I was admitted for overnight observation and by the next day my vision was blurry and the pain from the top of my neck to the back of my head felt like my brain was bleeding. I was so dizzy I could not stand to walk and I couldn't move my neck. The hospital gave me pain meds for 5 days before deciding to give me a ct scan with die, MRI, and a l p. I got a PHONECALL from a doctor at 8pm telling me I had a tumor on my right cerebellum the size of a half dollar.
The next day the dr recommended no surgery and went on his way. I spent 8 days on that hospital and when I left the very next day I went to see my physician. He scheduled an appointment with a new neurosurgeon from one of our best hospitals and I took my CDs to him. He read them and also saw what he believed was a tumor and recommended surgery within a month. I scheduled it and another MRI. Three weeks went by and my body was a little better, stilly dizzy, trouble with balance and I couldn't stand long.
I had my new MRI and my dr called me immediately and told me in fact I didn't have a tumor, I had a stroke. I was one week away from brain surgery and I just remember crying and crying. I finally got in to see a neurologist and being misdiagnosed I was never treated properly but I am on aspirin for the rest of my life and my dr recommended to never do yoga, neck massages or anything that could put my neck at risk.
I just started rehab for my balance issues and hope to be back to work in a month. My dizziness is no longer spinning but more of disoriented and balance issues, it's hard to focus and I can never get enough sleep. I was told I have brain damage but that young brains usually heal. I know I'm not the same and I have become a very cautious person after going through so much. I am very lucky and hope my story helps with common experiences.
VAD, Spontaneous (post partum), F40
I began to have neck pain and headaches that increased intensity about 3.5 weeks post partum a healthy pregnancy with a planned c section. About 2 days after sudden onset, the headaches became unbearable and without relief from motrin 800 mg and norco 10 mg/ 325.
I went to the ER and an initial CT Scan was done, but they found nothing but my blood pressure was elevated so was give. procardia 30 mg to take until my bp stabilized. They also screened me for eclampsia but tested negative despite the elevated BP because my urine was negative for protein. I was discharged and then followed up with my OB/gyn who referred me to a neurologist right away. The nuerologist gave me an occiptal nerve block which immedialy stopped the headaches and provided me with some relief but sent me for an MRI to rule out the worst. The MRI showed a dissection and a CT scan with contrast dye further confirmed a mild anuerysm/ dissection of my left vertebral artery at t he c5 level.
My issue now is that I am to return to work. I am a nurse and my employer can not put me on a modified duty due to my weight bearing limitations and restricted neck movements. My pregnancy disability runs out in a week but I have done some research and I found articles stating that VAD can occur post partum and even during pregnancy. My nuerologist says he cant be certain but my insurance company may give me a hard time to extend my disability. I need as much evidence as possible to help me fight them, I have not had any prior trauma etc... to my neck.
VAD, Stroke, Spontaneous (surfing accident), M27
I suffered a right VAD 2 months ago probably while surfing here in San Diego. Few days later I had a TIA with an associated spinal lesion while getting ready for bed (probably when clot broke off and traveled to my spinal cord). After 10+ hours in the ER, with CAT and MRA's they finally figured out what had happened and admitted me. There was a lot of confusion based on the slow and almost gradual the onset of my symptoms were. Neurologist was convinced for awhile I was having an asymptomatic migraine. Anyways, I wanted to contact you to find out if from all your correspondence with VAD people if you had found a VAD expert neurologist or vascular specialists in the California area (SD if possible).
I was EXTREMELY lucky and have been recovering very rapidly with just a few sensory symptoms, but there has been some question about whether it will ever be safe for me to return to surfing. Neurologist worries artery might be at risk since it is now damaged (I have no congenital or connective tissues disorders). With 19 years in the water I can't imagine stopping, and so I need to figure out who to speak to, or what to do, to determine exactly how dangerous/possible surfing again will be.
My neurologist has only been able to pull up carotid AD prognosis literature and the recurrences/strokes prevalence rates have him leaning towards pulling me from the water completely. To say the least I am scared by the idea and want to get a second opinion from someone who might have mo re experience ability to correctly evaluate exact risks.
Thank you for providing such a resource online and supporting others going through such trying events.
VAD, Stroke, Spontaneous, M59
Very fit and rarely unwell. Life time of being a migraine sufferer and so put symptoms down to this. I had a pain in the neck for some time, weeks, when on a Tuesday night the veins in my eyes were showing. Went to bed and woke with clear eyes but felt tired working during the day.
In the evening the right side of my sight was flickering and the neck pain severe. I was on my own and took pain killers and went to bed. Woke at 7.30 unable to walk and was disoriented. I was in France and finally reached hospital at 4.00. Diagnosis VAD followed by stroke. Intensive care for 10 days and air ambulance to Ireland on day 15.
I have spent 14 weeks in hospital being treated and in rehabilitation. 5 months have past and I'm now released to make life as good as I can. Am told that my present symptoms are normal and accept them to be so but try every day to fight them. Fatigue, weak right side, loss of sight to right, no fine movement, tinnitus, night mares, memory loss are the big ones. But I'm still here.
VAD, Stroke, Spontaneous (chiropractic manipulation), F55
I had a VAD last March 27/2013. I also had a stroke. Initially the CAT scan was inconclusive and an MRI confirmed a bilateral dissection of the basilar artery with emboli. I woke up in the middle of the night with severe double vision after having vomited. I spent I week in hospital and then was shipped to a rehab hospital. After my left leg turned blue I was shipped back to the main hospital where I had been before. On a leg scan I was diagnosed with an ovarian mass which was operated on last July. A little less than 2 weeks later I was told it was cancerous.
I went through 6 chemo treatments which hopefully ended at the end of January of 2014. The main troubling symptom I had was double vision. I had it for 3 months and I couldn't watch TV or read. When I moved to the main hospital in 4 months after my stroke it disappeared. Now when I turn my head I have a little bit of it in the corner of my right eye.
I left hospital in July in a wheelchair and now I walk inside on my own and can walk in the garden with a cane. I can speak and had left side weakness. I do physio everyday. It has been a long journey and I am getting tired of scans, blood tests etc. I am know on high blood pressure pills, statins and injectable heparin.
A recent scan of my legs show that the blood clot in my left leg which was really huge is now very tiny. I think the 2 in my right leg have gone away. They were much smaller than the right. When the stroke happened I vomited for a bit and had some ataxia. My world seemed upside around as I had severe double vision. I had no pain. Whether the cancer caused the stroke or it was the chiro adjustment I may never know. Prior to the chiro stuff I fell on hard stone from a ladder. Thanks for listening.
VAD, Spontaneous, F54
I was diagnosed with bilateral VAD in 2008. I had been having neck pain for a week or so but thought I had just slept wrong. While out shopping with my daughter the left side of my face went numb. My primary saw me immediately and then referred me to a neurologist who did an MRI with contract just in case. Noone was more surprised than she when she called me the next day to tell me to get to the hospital immediately. I was on Coumadin for 6 months. I had lots of headaches and the numbness remained to some degree .
After 6 months MRI showed vessels were healed. 3 years later I was experiencing severe headaches and had some neck tenderness. Neurologist ordered MRI with contrast which again showed a spontaneous bilateral VAD. Treatment was the same and after 6 months of Coumadin the vessels had healed.
I have returned to normal activity but still have frequent headaches and burning/tingling in my left ear and neck. I have tried lots of different medications for my headaches but either they don't work or I can't function when using them. It's been 2 years since my last dissection and the headaches continue. I usually have 1-2 a week that are bad enough to keep me out of work or doing what I want to do.
VAD, Stroke, Spontaneous (chiropractic manipulation), F43
A few years ago, after leaving work, I stopped by a newly opened chiropractic office for an adjustment. It was fine, until he took me by the chin and the back of my head and twisted. He literally, popped my neck and it was painful. I left the office and began to have a severe headache, that turned into the worst 3 day migraine of my life. The headache did subside and I simply decided never to see this doctor again, it was that simple.
Some time passed and I began having vision problems. These episodes were always in my right eye and began to worsen over the next few months. I ended up having a six week continuous headache and 2 strokes within this same time frame. It has been a long road and very frustrating. I have had numerous missed or erroneous diagnosis, several trips to the ER, ambulance rides and Tia's happening daily. I had an additional stroke behind my right eye and I now have a permanent black spot in my field of vision.
They finally discovered what was really going on last year and also discovered a brain aneurysm in the left frontal part of my brain. I am now with a great group out of Atlanta, Ga., at the Grady Stroke Center. I am on Plavix 40 mg., Simvistatin and aspirin, daily. I have been getting along great up until about two months ago, and I have become symptomatic.
Two weeks ago, I had another mini-stroke and was hospitalized for three days. My condition has worsened, I now have not only the dissection, but what remains of the artery is almost 80% blocked.
I want to add that no one believed me about my symptoms. The hospitals kept sending me home, after only doing a dry cat scan. The key to finding this problem, cat with contrast or MRI. But let me note that all the staff involved in my case missed the dissection on the original MRI. They only noticed the two strokes. I am so glad that you started this website and I hope that maybe we can all come together to advocate against this aggressive manipulation. I could have died from this and now I have lost everything that I own. My life was turned completely upside-down. I am one of the lucky ones!
VAD, Spontaneous (hairdresser), F50
I am a healthy 50 year old woman who had worked full time with 3 teenagers. Went to hair salon that got new sinks. Two days later had a brief episode of blurred vision and dizzy, followed by a headache. Assumed it was a migraine. Two days after that was at the start of a spin class where I rotated my neck. Suddenly the room was spinning. I immediately got off the bike and laid down. The room was spinning, I was vomiting, my speech was slurred along with numbness and tingling in my extremities. Was rushed to the ER where after a cat scan then a cat scan with dye I was diagnosed with a right VAD. This all happened on March 1, 2014. Was on heparin and Lovenox, then Coumadin for 3 months. It has been 4 months now. I still have daily headaches and head pressure.
Whenever I bend down I get lightheaded and makes my head pressure and pain worse. I am only on a baby aspirin now. I still am unable to return to work. I am a nurse and need to be back at 100% to take care of patients. It's very frustrating still feeling like this. Haven't had any scans since the day it happened in the ER. My insurance won't pay for any more.
VAD, Spontaneous, F26
I was diagnosed with VAD after experiencing neck pain/stiffness for a week. Just thought it was a stiff neck from sleeping wrong. I noticed as the days went on I was running in to and dropping things I normally would not. I ended up going to the ER when they did a CT and informed me I would be transferred to a different hospital. I under went an mri and was immediately started on a heparin drip and moved to the stroke and brain floor.
After multiple neuro tests and blood draws I was released 48 hours later on lovenox, coumadin, and gabapentin. I'm still experiencing neck stiffness and pain at the base of skull. Inr check every 3 days, when I reach the inr they want me at I can stop the injections. Follow up mri in 3 months to see if it has healed. I wish everyone luck, who would have thought something like this was possible, especially to people so young.
VAD, Stroke, Spontaneous, M67
I have had chiropractic manipulations in the past but it has been over 25 years ago. I had a VAD on the left vertebral artery resulting in left and right cerebellar strokes (Mild). I have been on blood thinners for 5 months and the occlusion remains stable. No deficiencies experienced. Possibly due to repeated motions lifting boxes while moving, but not sure. No one seems to know why it occurred since I am fairly fit for my age, not high in cholesterol, normal blood pressure, etc. I am continuing to take blood thinners and hoping for eventual healing of the artery and absorption of the occlusion.
VAD, Stroke, Spontaneous, F38
I am a 38 year old female who had a right sided vertebral artery dissection on June 30, 2014. I was seen in our local E.R. and was misdiagnosed for 18 hours before being transferred to a large trauma center. Once there, they treated me promptly but I had already had a large stroke.
The next day, I had a heart attack because of the stroke. I spent 5 days in ICU and 3 days in a step down room because of this. I have never seen a chiropractor or been in an accident. The doctors believe this to be a spontaneous dissection. I thought that I would get past this stroke but now I found out that I will have heart problems for the rest of my life. If you even think that this may be happening to you, push the physicians to do an MRI immediately!
VAD, Stroke, Spontaneous, M26
I want to start by saying I'm so thankful to have found this site.
Prior to this ordeal, I was a fairly healthy 25 year old. Being vegetarian and a health nut, I ate a balanced diet and exercised 30-45 minutes 4-5 times per week. I have generalized anxiety and panic disorder that developed from a negative experience I had with drugs when I was 18. The diet and exercise really helps manage my symptoms along with my medications: buspar and lorazepam. Having problems with anxiety and panic, I'm pretty used to racing thoughts, chest pains, arm numbness, strange sensations and feeling mentally overwhelmed.
My experience with VAD is very recent and ongoing, it started June 18th 2014.
I work as an Optician for a major optical chain and independent optometrist. My work isn't stressful by any stretch, but at times we are short-handed and we can get very busy. I was working June 18th and had some mild shoulder pain that I shrugged off, thinking it was post-workout aches and pains. Suddenly, I experienced a sharp pain in my left shoulder and neck. The pain was so intense that I stopped mid-sentence while speaking with a patient and excused myself from the floor. After a few minutes of the persistent pain, I decided to call and ask my mom to take me to urgent care since I didn't feel comfortable driving myself.
My mom arrived at my work within 20 minutes. In that time, I began feeling light headed, confused and my vision became hazy - much like what I've experienced with prior panic attacks. This time my condition was getting progressively worse as each minute passed. When we arrived at urgent care, check in was pretty quick. I think the receptionist could tell I was in a lot of pain and needed to be seen asap. I started having trouble speaking while the physician was assessing me. I was barely able to tell her I get panic attacks and took my ativan earlier. I was immediately sent to the ER. The drive from the urgent care clinic to the hospital is maybe 10 minutes tops. In that time I was losing my eye sight and becoming incoherent.
At the ER they ran just about every test in the book; CT scan, blood work, drug screen, spinal tap, and many others. They first suspected a brain infection but ruled that out as each test came back negative. They admitted me to the ICU without a real diagnosis. I was on bed rest, put on fluids, and was in a complete daze. I could make out shapes and colors but no details like faces or writing. I recognized that I was in the hospital but wasn't sure where or why. I couldn't feed myself or use the bathroom on my own. I had a nurse at my bedside who helped me eat and use the urinal.
The next day I was still in a daze but realized something serious had happened. About 4 or 5 different doctors checked on me at some point and I was coherent enough to talk to them and let them assess me. I was asked to count backwards from 100 by 7's, draw a clock, and asked "what does birds of a feather flock together mean?" I struggled with each task and question. I overheard one of the doctors say that I needed an MRI. During the wait for the MRI another Dr spoke with me. I asked her why I was having an MRI. I told her about my history of panic attacks and that I've never had one this bad. She told me that they suspected I had a stroke but weren't sure why, and the MRI would confirm this.
After the MRI, I was taken for another CT scan. I was worried at this point because I hadn't received any answers from the MRI. The nurse told me that she suspected they found something on the MRI and wanted to confirm it with another scan.
Once the results came back, a team of doctors and med students came into my room to give me the diagnosis: left vertebral artery dissection.
I was immediately put on heparin and told I would be taking anticoagulants for the next 6 months. I was discharged from the hospital after 3 days and put on coumadin and lovenox injections.
I felt like I was hit by a train the day I came home from the hospital. I was relieved to be home, but still in pain and overwhelmed by what I went through. I fell asleep that night around 10:00pm and woke up around 11:30 to use the bathroom. I noticed the right side of my body was starting to feel numb. I had trouble getting out of bed and walking to the bathroom. I completely lost vision in my right eye. I was rushed back to the ER. Upon my arrival they called a code neuro and took me back to a room. I was having a 2nd stroke. I was stabilized and transferred to a larger hospital 30 minutes away so I could be seen by interventional radiology.
I went in for another MRI and CT scan which revealed an aneurysm and blood clot with the left vertebral dissection and 2nd dissection in the right vertebral artery. The MRI also showed some damage in my brain to the left temporal-occipital region and left thalamus.
Now its almost 2 and half months later and I've been on anticoagulation and anti-platelet therapy with coumadin and aspirin. I finally have gotten my INR consistently stable between a 2-3 within the last 3 weeks. My levels at one point dropped as low as 1.5 and my dosage had to be increased. I've been in and out of the hospital at least 4 more times. Each time I've had uncontrolled numbness on my right side, neck pain, dizziness and high blood pressure. Subsequent MRIs and CTs haven't really shown any changes, except my most recent CT which shows some improvement with the right dissection.
I have an Angiogram coming up this Thursday 9/4, and I'm set up to see a neurologist in October. I'm not really too happy that I have to wait another month to see neurology but that's the earliest appointment I could find.
In the meantime, I've also been put on blood pressure medicine. My anxiety and panic symptoms have gotten PROFOUNDLY worse. I'm now taking ativan once a day at night to help me relax and sleep. I've had persistent neck pain and stiffness that varies in intensity and sometimes doesn't respond to medication. I'm taking muscle relaxers and tylenol to help manage the pain and muscle tension.
I constantly feel strange, like being hungover without partaking in adult beverages. I notice that I tire much quicker than I used to. I have intermittent balance deficits that's worse when I'm tired or fatigued. I sometimes completely lose my train of thought during a conversation or have trouble finding words.
Other than that I feel pretty lucky. I'm able to walk around unassisted and still am somewhat independent. I'm able to drive and have gone back to work full time. My doctors have ordered that I not lift anything heavier than a gallon of milk, and no strenuous activity until the dissections heal.
VAD, Spontaneous, M50
February 19, 2014 my wife and I were working out at home. I was doing some push ups and then the rowing machine and then the treadmill. I was alternating between each in 5 to 10 minute intervals. I am 6'2" and weight 160lbs and I have worked out since I was a young teenager. I was about 30 minutes into my workout when I was switching to the rowing machine and I looked down to put my foot into the left holder and all of the sudden I had this very disconnected feeling and I stood up but couldn't walk. My equilibrium on my left side was not working.
I sat down in a chair to try to gather my thoughts on what was happening but told my wife we need to go to emergency right now. I got up and climbed the stairs but had to hold the rail and made it to the next floor and got dressed. I had to compensate by tilting to the right. We made it to the emergency room where I was sick to my stomach many times. I was asked by the doctor to walk a straight line. I tried but would turn to the left. He called code purple which is for a stroke and I got and MRI and Cat Scan. The Cat Scan showed a Vertebral Artery Dissection on the left with some blood still getting through but not much. Within 30 minutes I could walk on my own and I hadn't had any medicine yet. The Neurologist came to see me and told me of my condition and said that my right side had fed blood over and that is why I could walk again.
I was admitted for 5 days and went through every test related to stroke. I was also checked for Marfan's but luckily I didn't have it. I was put on a heparin IV and Coumadin so I could leave the hospital within 5 days. Almost 7 months later I feel better but still worry that is could happen again. I go get an MRA/MRI this week to see if it has healed and so I can come off Coumadin. If not I have to stay on Coumadin for the complete year. I was also ordered not to lift more than 10 pounds which is tough to do, My dogs head weighs more than that. I am glad my doctors knew exactly what was wrong and acted quickly to help me recover. I wish all the best to the people who have had VAD.
VAD, Stroke, Sponateous (extreme valsalva manouver), M38
I think I’m the luckiest guy in the world… and I am probably abusing of this luck. I'm 38 now, living in Sao Paulo – Brazil. I’ve had 4 major dissections since 2007, only in my right vertebral artery:
July, 2007: during a “fury moment”, I performed an “extreme valsalva maneuver”, causing a peak in my blood pressure, leading to the dissection (V4 vertebra). It happened during a trip to Europe, and I mistook it for a regular neck pain taking anti-inflammatory and pain killers (not aspirin, unfortunately…). A cloth formed and 10 days later it loosed itself ending up in the right part of my cerebellum: felt extreme neck pain, nausea, lack of balance and COMPLETE NUMBNESS of the right part of my body (no coordination problems). Went to a hospital and one hour later, almost all symptoms where gone: apparently the cloth dissolved itself and a very small part of the cerebellum was injured. Some parts of my face, arm, thumb, neck and leg stayed numb.
Only 7 days later I went back to Brazil and checked into a Hospital, remaining for 7 days with heparin treatment. All symptoms were gone by the time I left the hospital. After taking warfarin for 3 month s, the MRI showed complete re-canalization of the artery. My doctor easily identified that my right artery was very narrow compared to the left, but said it was a common “morphology”. His conclusion was that it was genetically weak and the dissection was caused by a “neck trauma”, that I was lead to believe, but it never happened… Continued with my regular athletic life, going to the gym 4 to 5 times a week and taking 100mg of aspirin every day.
Juny, 2011: another “fury moment” happened, leading to another dissection in a different section: V3 vertebra. For about two weeks, I felt neck pain and migraine on the right part of my head (temple): the pulsating pain accompanied my heartbeats. No hospital needed, but did a MRI, that showed the dissection, causing partial obstruction of the artery. Again, only aspirin was prescribed, 3 months later another, MRI showed complete re-canalization. Doctor attributed the dissection to the “genetic weak morphology” and again insisted on the alleged “neck injury”… again continued with my regular athletic life.
January 2012: after a regular/mild bodybuilding workout (valsalva maneuver), started feeling neck pain and right side migraine again… MRI showed the dissection, again in the V4 vertebra, but not exactly on the same spot of the first dissection. 15 days of pain, and aspirin. After 3 months, MRI showed re-canalization but this time the place dissected became considerably narrow. Began feeling a mild neck pain and migraine for the next 6 months, taking only aspirin and pain killers (dipyrone). The constant pains made me switch the doctor, finding the right one on the internet, involved in VAD research in my city. Showed him all the MRI images of the previous incidents. Analyzing my vascular system he concluded that my other veins and arteries were fine, with no apparent sign of common related syndromes. Same conclusion: “genetic weak morphology”. Treatment: 3 months of “Gabaneurin” 300mg (Gabapentine), twice a day for the pain. Pain gone and once again, continued with my regular athletic life.
February, 2013: After a bodybuilding workout (valsalva maneuver), started feeling neck pain and right side migraine… again. MRI showed no apparent dissection. Doctor concluded that the valsalva maneuvers were the cause of the dissections: “blood pressure peaks”, and concluded that it was prudent to go easy on the workouts, but I could still walk my 5km 4-5 days a week. Sadly, the only thing to do was to genetically investigate the cause of the artery “weakness”, by making my complete genome sequencing: this exam is too expensive right now in Brazil (around US$6.000,00), so until now, I did not do it. Neck and migraine now become very mild but constant: EVERY TIME I MADE A PHYSICAL EFFORT, IT HURTED.
October, 2014: by the time the pains were decreasing, I gradually increased the intensity of my workouts. Everything appeared fine, until again, the neck pain and migraine came back: strangely around 2 hours after a workout exercise…
TODAY: The 15-day period of considerably pain is fortunately gone and I made an appointment with my doctor for next week: probably he will ask for another MRI and the genome sequencing. CONCLUSION (until today…): I have a “weak right vertebral artery”, don’t know if the cause is genetic or caused by anything I did, or my life style…. I live a healthy life (BMI around 24), exercise 4-5 times a week. My blood pressure was diagnosed in 2010 as mildly high, so I take 25mg of Atenolol since then, and it is now normal-to-low. I admit to have a very nervous temper and every often I have “fury moments” related to everyday problems: car traffic, business, Brazilian politics against our liberties and so on… THE BLOOD PRESSURE PEAKS, CAUSED MOSTLY BY “VALSALVA MANEUVERS”, ARE THE CAUSE OF THE DISSECTIONS. Recommendation so far: no physical efforts, no valsalva maneuvers, no getting angry… I will keep you informed after meeting the doctor.
VAD, Stroke, Spontaneous (sea sick), F54
My VAD started back in July while in holiday and I went snorkeling. I became very sea sick for 45 minutes and then had pain in my neck and a headache. As I have had a lot of neck problems in the past and had discs fused, I thought it was related to that. I then went away again for a week before returning to work.
On the first day back the headache became unbearable, my speech slurred and I went to casualty. They did MRIs but the VAD was missed. I was sent home being told it was a bad bout of migraines. The pain didn’t improve, I started having symptoms in my left arm and leg in that they both became weak it was only after my husband asked for the scans to be re checked a week later that it was found.
I was rushed then to hospital and put on heparin. I am now on rivaroxban one of the newer types of anti coagulants as well as anti migraine tablets and pain killers to help with the severe headaches which has helped enormously.
I was discharged from hospital 10 days ago. The function on my left side has returned to normal and headaches have improved but come back if I do too much or get tired. I then become light headed too and my voice becomes husky and quiet. I also have problems still with word retrieval. I am now taking small walks as instructed by my neurologist but have been told not to do any other forms of exercise until after my next MRI. l am not sure how much to push myself or do or if I will cause further damage. I try and rest as soon as I get tired or the headaches return but I can’t seem to find a time to stop before that happens.
I have seen other blogs from people who say that they are not to lift anything - does anyone know how much you can lift and can you pull ( such as a sticky dishwasher door?) I seem to have good and bad days My next scan is in 5 weeks and I just hope it will show healing of the vertebral artery. Thank you for setting up this website - It is so good to know you are not alone.
VAD, Stroke, Spontaneous, M61
Thanksgiving one year ago, memory loss following friday continuing from thanksgiving day, went to er, had stroke on Saturday. Remained inpatient until 1/2/2014.
Not a big drinker, occasional cigar, stressful mgmt job for yrs, overall great health. Hemiparesis remains on left side, fatigue, balance issues remain.
I am considering hyperbaric oxygen therapy now, to see if I can recover more. Does anyone have experience with this?
VAD, Stroke, Sponatneous, F53
I was at the gym on the elliptical machine and got the worst headache I'd ever had and as I stepped off everything got worse. I got incredibly dizzy and couldn't walk straight, then felt sick to my stomach so I sat in the bathroom stall for an hour before they called the paramedics and was in the ER for a CT. They admitted me and I had a stay for about 4 days on a heperin drip and then transitioned to coumadin. I have no residual permanent damage physically or mentally from the stroke they insist I had. However, the fatigue and headaches is what was the worst for me.
Now about 2 months later I thought the headaches were subsiding and they have recently returned. I feel a lot of pressure in my neck and it's painful to turn my head sometimes. Tylenol does help but I wonder if this is part of the healing process. I, like others feel fortunate it wasn't any worse especially waiting an hour or more to get to the hospital with a stroke (I couldn't move off the bathroom floor to call for help). I wish you all good health and thank you for sharing your story.
VAD, Stroke, Spontaneous, F28
woke up in the middle of the night one night, with head and neck pain and severe dizziness. I thought I was having a migraine, so I took a simple pain reliever and tried to go back to sleep. When I woke up a few hours later I still wasn't feeling the best, but I thought if o got up and moved around I would feel better. So I got up and went to work. While I was at work I got so dizzy I fell, anytime I tried to sit up I would vomit. Luckily I work at a hospital, so my co workers got me to an exam room and had a doctor from urgent care come look at me. I was told I had an ear infection, I was given IV fluids and zofran and sent home.
Two days later the pain was still there and I was not feeling better. So I went in to urgent care, this time the doctor there sent me straight to the ER. Once I was there they ran labs and did a CT. That was when I found out I had a couple of strokes. They sent me by ambulance to a facility that had a neurology department. I was very lucky to not have any neurological deficits.
A week and a half after all of this took place I was able to go back to work, on restrictions, so life isn't completely back to normal yet. I am on Coumadin, and I have another scam in a month to see how it's coming along.
VAD, Spontaneous (Jiu-Jitsu), M45
On November 17, 2014 after dropping my son off at school and returning home to prepare for my day. I sat down on the couch with my feet on an ottoman and my laptop in my lap. I was going to quickly browse email and my websites before taking a shower. Approximately 5 minutes after sitting down my vision doubled with the view from one eye stacked above the other. The view from my left eye was level, but blurry. the view from my right eye was tilted at a 45 degree angle. I never felt dizzy or nauseous, my brain just couldn't comprehend what I was seeing. As my vision began to clear up the top teeth on my right side began to feel numb. I liken it to the feeling of Novocaine just wearing off at the dentist. Sort of a buzzy numb, but still some feeling. The sensation moved up the right side of my tongue to my ear and within another minute or so the entire episode was over having lasted 5 minutes or less in total. I felt "off" the rest of the day as if I was a second behind on comprehending anything. I decide to work from the couch and made quite a few phone calls to clients and associates and only in telling some of them what had happened were they aware of the episode. Eventually I was guilted into going to the ER and at 1:30pm I took a shower before driving to get checked. I discovered when washing my hair that the very tips of my fingers on the right hand were slightly numb, once again the same "buzzy" numbness.
In the ER they ran a CT scan, EKG, and blood work. Those along with my neurological tests did not show any sign of a stroke. The doctor was going to release me and encouraged me to see my personal physician about an MRI to completely rule out a stroke. I sent my wife ahead of me to get home and as I lay there alone the double vision and numbness came back. I managed to text the words "Come back" to my wife through a blurry left eye and pushed the call button for the nurse. I was hoping to have someone observe my eyes and face during the actual episode, but no one made it back in time. After relaying what had happened to the medical staff I was sent to a nearby hospital for observation and an MRI.
After spending the first night ever in my life in the hospital with no recurrence of the symptoms I was visited by the attending physician and I told him about a theory I had actually dreamed about the night before. The prior week during BJJ classes we had been practicing choke holds. I also helped to assist in my youngest sons classes which has the instructor performing the steps of the choke hold on me while the kids watch. My thought process was that in doing the maneuver so many times in practice and with the regular rigors of rolling in live matches there was some swelling or possibly a pinched nerve. I have no recollection of any other traumatic incident to my neck. The doctor at least took that into consideration and added my neck to the areas to be scanned. Later that morning I had an Echo cardiogram performed followed by the infamous time in the tube for an MRI.
When the neurologist came in to explain all of the possible causes for my symptoms I explained my theory about the BJJ practice. He felt some of it was plausible, but had some doubts about how it could have caused all of my issues. He left to go look at all my results with a promise to come back and tell me what was going on. 10 minutes later he came through the door and I knew from the speed of his return and the look in his eye that I was in trouble. He cut right to the chase and told me that the scan had revealed a clot had formed under the tear and was causing a flap to flutter into the stream of flow causing the 2 TIA's that I experienced. He told me that I had a long road to recovery and it needed to start right then by getting to ICU. 6 total days in the hospital, 3 in ICU, a heparin IV, more blood work than I thought my body was capable of producing, neurological tests every hour that I got so good at I began to perform them on myself as the nurses walked into the room, and finally being stabilized to an INR of 2.17 using Warfarin, I was released to go home on Sunday the 23rd of November.
The current treatment plan is blood thinners for 6 months and a re-scan at 3 months and 6 months. My journey to recovery is just beginning and I already know I have many things to learn about diet restrictions and being extremely careful not to get cut or bruised. I cannot say for sure that BJJ caused this or maybe it was weakened through other traumas and the week of having pressure on my neck was the final straw, but if I hadn't mentioned it, they were not planning to check my neck and changed because I spoke up about my activities that could have possibly contributed in some manner. I would not change the things I was doing prior to this happening, because living life to its fullest comes with some form of risk. I know I'm very blessed compared to many of the stories I have read here and I hope that in sharing we can find more ways to treat this condition and have faster and more complete recovery for everyone affected.
VAD, Stroke, Spontaneous, F28
It all started in January of this year. Right after my 28th birthday I began experiencing spontaneous symptoms which included extreme headaches, blurred vision, dizziness, tingling of the extremities on the right side of my body, neck pain, fatigue amongst other things. I never experienced more than one symptom at a time. My PCP sent me to a Cardiologist, extensive blood work with all results coming back negative.
My life completely changed July 5th. I awoke to a paralysis to the right side of my body and a pain in my head like I had never felt before. I was rushed to the nearest ER where a regular CT Scan was performed and I was told by the attending physician there that my testing was fine and that I was being released. I argued that something was wrong with me and refused to be discharged. By this time I had gained mobility back to my extremities though I felt extreme heaviness and was slightly slurring words. I was admitted and a neurological consult was ordered. Neurologist ordered an MRI thinking it would be complicated migraines. When the results came back he found two white spots which were indication of two mini strokes, he then ordered and MRA which found my right VAD. He was in disbelief, he then ordered a CTA to confirm the findings in the MRA.
I was placed on Warfarin injection. I have since then been taken off of the Warfrin and am on a 325mg of asprin daily. I am also on 100mg of Topamax once a day and 50 mg of Indocid twice daily. I still suffer from major neck pain and headaches. Some days are better than others. I was unable to work for 4 months. I had to do a complete career change. And am still in light duty. Its a major rollercoaster. One moment you are okay and the next you aren't. You have to watch every aspect of your life. It is definitely overwhelming.
VAD, Stroke, Spontaneously, F48
It's amazing reading the stories on here! With my wonky memory, I don't know if I've even read them before. I was 32 when it happened to me. Spending a day out with my kids (one 9, the other 6 and seriously disabled). We hit a grocery store before the long drive home and I was blinded by the worst, most intense sudden headache ever. We checked out and headed toward home but a mile down the road I had to pull over and begin vomiting. Couldn't talk. My son sized up the situation and ran to get help, told a homeowner to call 911. An ambulance came and took me away and I didn't see home for 2 weeks.
The initial visit to the emergency room ended with them discharging me with "an ear infection". I could still see at that point. As I got into the car (my husband had arrived by then) my body stiffened like a board, my teeth clamping down on my tongue. My husband ran back inside for help, I was pulled from the car, and that's all I remember for a week. During that week I was on masses of drugs to stop the seizure, and had a tube down my neck to let me breathe. I can only imagine the utter nightmare my family went through... they don't like to talk about it....
I'm half blind in both eyes now. My eyes, oddly, wouldn't even work together for several years following. I couldn't drive at all for 4 years, tough when you live in the middle of nowhere. When I got called in to sub at my kids school (recess aide) I would walk the 2 miles there, and catch my daughters special bus home. I started driving a little, first on our property, gradually to the gas station. Eventually I worked up to where I am now, driving a limited area, never on multi-lane roads. In unfamiliar areas, my eyes stop cooperating with each other so I guess this is as good as it gets.
My right side has constant strange sensations due to the nerve damage, and the damage from the initial seizures. My memory is beyond unreliable. Anything with numbers just isn't happening. I started getting migraines after the stroke- the worst is that they are triggered by, among other things, chocolate!
I started mountain biking to regain my balance, and spent several years doing that. More recently I've taken up kayaking and archery. Trying to stay as healthy as possible for the sake of my family.
Well, thanks for letting me vent. I don't dwell on this much anymore, but sometimes, when I run into something I'd like to do but can't, it's tough.
VAD, Stroke, Spontaneous (chiropractic manipulation), F57
Thank you for allowing me to share my story. On march 24, 2014, After having symptoms of carpel tunnel I went to a chiropractor . He performed a neck manipulation along with cracking my back and pulling my legs. As soon I got up from the chiropractic table I felt a rush of head pain and some dizziness as I walked to the front office. I informed the chiropractor and he said " that's too bad".
I experienced the very bad headache with multiple analgesics for a week. While at work at( I'm a nurse at a hospital) I had symptoms of a stroke, was wheeled to the ER and diagnosed with subdural hemorrhage. Loss of use of left side and dysarthria. 4 days in ICU conservative treatment.
Went home, lots of therapy, then in august neuro surgeon discovered the ich caused a fistula. Had surgical repair , had more therapy and after 10 months now back to work with persistant headache and severe tinnitus.
1. I am interested in finding data and stats to support causation from the chiropractor. My personal mds don't want to get involved
2. Finding an attorney with knowledge of malpractice of chiropractors in southern. California.
3. Any court case information with chiropractors an neck manipulation. Please help me. I have only found your website. Thank you very much I would like to see more stories and proof of where to find causation.
VAD, Bi-Lateral, Spontaneous (chiropractic neck manipulation), F30
I had a bilateral VAD in 2010. It's now 2015 and I still have chronic head pain. The dissection healed 1.5 years after the diagnosis in 2010. Have you heard of any one else who is healed of VAD but has chronic head pain every day since?
My neurosurgeon, after 5 years of trying everything to rid the pain, has said that the pain is permanent. That I will have head pain everyday for the rest of my life and nothing can fix that.
Am I the only one? I've searched the blog and haven't found another in the same situation. Have you heard of this before? She said something about the blood flow permanently altered from the dissection and will always cause pain. Thank you so very much for reading and for creating this site. It's been a great support these last 5 years.
VAD, Spontaneous (possibly chiro linked), F23
For about 3 1/2 weeks I was experiencing neck pain in the right side of my neck that would radiate down into my shoulder. I woke up one morning and wasn't able to move my neck. Obviously I thought I had just slept wrong. I gave it about a week to see if it would go away and it never did. Before I was seen by a doctor, I called my local chiropractor and made my first appointment. I explained what was going on and how I had been experiencing migraines along with the neck pain. He did electro muscular therapy as well as put me in a massage chair. Once this was over he manipulated my neck making it pop god awful noises. I continued this through 3 different appointments. After the third appointment the doctor realized there was nothing else he could do for me. All he had done was an x-ray of my neck and saw that my spine in my neck was completely reversed. He thought this was the reason for my neck pain. He told me to call and make an appointment with an orthopedic doctor.
I never called to make an appointment because I felt like I didn't have time to call and wait forever on an appointment. Two days ago I work up with such severe neck pain I couldn't move at all. It was unbearable. I pushed through it that day and the next day, (yesterday) I decided I had to go to the ER. When I went they became very concerned and did an MRI on my neck. They found the torn vessel and decided I needed to be transported to a bigger hospital close by with neurology specialists that would know more about this. He told me it was very serious and I needed to get there ASAP. I was in complete shock. I thought it was only a pinched nerve or something small like that. Here I am in the middle of my last semester of classes to be a teacher and I am told I have to go to CMC- Charlotte? I broke down but went along with it.
I get to Charlotte yesterday only to wait for 7 hours before seeing a doctor. In the mean time I hadn't eaten anything and had to have a CT scan to get a closer look at the vessels. I finally spoke with the doctor after him being able to look over the results. He said that mine wasn't in stroke range because it was 4 inches lower than those who have strokes because of this. He said the vessels have 3 layers and my inner most layer was the only one torn. The blood was building up inside but it was stable. I was placed on Aspirin and Plavix (blood thinner) to let the vessel start to mend on it's own over the course of the next few months. Since mine is so stable I was able to be released the next day. I have to follow up in 3-4 weeks for another CT scan to monitor the vessel and then another CT scan in the next 3 months. I can't do any heavy lifting or strenuous activity for 6 months.
This has been such a crazy experience for as before I was perfectly healthy! Is there anything I should keep in mind or try to help the process of healing speed up? I feel so blessed to have caught this so early! I am also thankful for such a wonderful team of doctors I had.
VAD, Stroke, Spontaneous, F31
I was 26 when I had my first stroke. When I first got symptoms (blurred vision, nausea) I thought it was a migraine, which I had suffered from since childhood. However, these quickly progressed to severe vertigo and vomiting and lack of coordination. I called a friend who called an ambulance and took me to the ER. I'm an RN, so I know the symptoms of a stroke. When I arrived at the ER, I told the on call physician that I thought I was having a stroke. They took my medical history, and as soon as they learned of the migraines, dismissed my symptoms as those related to migraine. I asked for a CT scan, but was told it wasn't warranted. I was then discharged from the hospital with a narcotic prescription for headaches.
My symptoms mostly resolved over the next few weeks, aside from incredible fatigue and persistent headaches/blurred vision. I then had a second episode of loss of balance/coordination which did not resolve. I actually fell off my chair while reading, it was so bad. I was too embarrassed to go to the hospital (as I had been "wrong" in my self-diagnosis a few weeks earlier) so I did not seek medical attention. However, unlike before, my symptoms did not get better. They progressed to severe vertigo, disturbed speech, and numbness in my face and limbs. I finally went to the hospital where I was treated for dehydration related to persistent nausea/vomiting and sent home.
I went to my family physician after burning my foot in the bathtub (because I couldn't feel the water temperature). It was her who finally took me seriously and sent me back to emergency to have a CT scan.
When they finally got the CT results, it showed that I had bilateral vertebral artery dissections with resulting strokes. It also showed that the strokes occurred at different times, the first likely when I had gone to the ER via ambulance the first time. I was admitted to the hospital for about a week.
It has been a long road to recovery. I had to re-learn to walk and to write. I still suffer from fatigue, occasional speech problems and lack of coordination. I lost my drivers license for 3 months and had to move myself and (then 2 year old son) in with my mother to help us. I am now back to work 3 days a week but that is the most I can do without being too tired. It's frustrating but I am lucky compared to many.
Thank you for creating this site. I hope that increases awareness about this illness and that other people's symptoms are not so easily dismissed. This is becoming far more common and physicians need to look for it rather than assuming a young person cannot be having a stroke.
Side note - I was 26 years old, thin, active, otherwise healthy. No stroke risk factors other than the presenting symptoms (vision and speech problems, neck pain, vertigo, vomiting).
I would be happy to talk with anyone else who has been through this or has more questions about my experience.
VAD, Stroke, Spontaneous (massage), F33
I had a VAD and stroke at 32 years old. They believe it was from deep tissue massage on my neck. I had always had neck and shoulder pain. I had horrible vertigo and thought I had food poisoning. I then went to the hospital with vision issues two days later. Thinking I had a torn retina from vomiting. Turned out I had a stroke and VAD on the right side.
Nearly two years later my vision is improving greatly; however, I still have flashes on the left side.
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