Interior Carotid Artery Dissection--Who Knows Their Stuff?
I am a 34 year-old active, white female, average height, very healthy weight. I had an interior carotid dissection over a week ago, they think from a sports trauma (though I didn't do anything where I knowingly hurt myself). Luckily, I have 100% collateral blood flow, no brain damage, no shifting, etc...best possible outcome.
Interestingly, in addition, I have tested positive for antiphospholipid antibodies (after testing false-positive for syphilis---common, who knew). More tests reveal that I test positive for anticardiolipin antibodies, negative for lupus. They have hooked me up w/ a hematologist for follow-up on this (and he is monitoring my Coumadin for the next 3-6 months). He is running other tests to make sure that I do not have anti-beta 2 glycoprotein 1 instead of anticardiolipin. Evidently, the test he ran 1st is not a specific test? For some reason, the anti-beta would be worse? I don't really understand all of this. He doesn't seem to think there is a connection between what
happened to me (icad) and the antibodies, but there seems to be some research saying that there might be (several journal articles). He says my antibody levels (whatever type they are) are low, so they just need to be monitored & if they
ever get high, I might need aspirin therapy to avoid a stroke.
Right now, my biggest frustration is that NO ONE seems to be able to tell me what I can and can't do. I guess I am some sort of scientific anomaly, given that I survived this w/ no evident complications or neurological deficit. Plus, they are dealing with someone who is used to lifting 3 days per week & doing cardio 3 days per week. Can I drive? Can I bend over? Can I do laundry? Go Christmas shopping? Work? Have sex? Exercise? One doctor says I'll never exercise again. One says, maybe in 6 weeks. One says maybe in 6 months. BUT, everyone qualifies everything they say with, "but I'm really not sure." Can I just walk around a track right now? Isn't that kind of like walking at the mall? Can I do whatever I want as long as I keep my heart rate below X? The official word from my discharge is not to lift anything over 2 lbs. and to pretend like I had abdominal surgery. Please, I can lift a 30 lb. dumbbell over my head without even thinking about it, & I can do my fair share of sit-ups, so give me
some information that is relevant to me. So, I contacted a sports medicine orthopedist that I have seen to see if he knows any doctors who work with athletes recovering from this condition or other head/cardiovascular type injuries/stroke. If you can point me in any sort of relevant direction, or know anyone I should talk to, I would appreciate it. You know, no one ever thought Lance Armstrong would get on a bike again. I just got certified as a personal trainer & was in the process of opening up a gym. This is not just a simple inconvenience to me. All this indecision makes me wonder if I shouldn't have asked more questions when they said surgery
wasn't an option for me (too dangerous when blood thinners should do the trick). Do they REALLY know how to treat this condition? Where is the cutting edge science/medicine with respect to carotid artery dissection taking place? I just want to find a doctor who wants to try to help me get back in the gym if at all possible.
I just got the results of my latest doppler of my neck. I had dissected Sept 18 so it is almost three months now. My dissection is resolving!. I am so happy about that but still very tired. My neurologist suggested a sleep study which showed I have severe sleep apnea. No wonder I am always so tired. I will probably need to use a CPAP at night. I do not have headaches anymore and other than the fatigue feel quite well. I still have absolutely no idea about how I dissected but I will just stay in the happy knowledge that I am healing. Hope you get the same results.
Oh, that is such good news. Such a relief. Congratulations!!!!! And guess what? I just went yesterday to my vascular surgeon. First, they did a doppler on both carotids. I couldn't hear the whoosh sound as loudly on the right as I could on the left. And the tech was very supportive and sympathetic, wishing me good luck. I thought, damn. Then I saw the doc who said my dissection appeared to be resolved. I couldn't believe my ears. He said no restrictions on activities except chiropractic or anything that would extend or snap my neck back. He said these dissections are "random" and he had a curious lack of curiosity about the cause of my dissection (my daughter, a doc, says if you want curiosity about rare conditions, you go to an academic medical center). He told me (again) the story about the wife of a doctor in the next building to his (herself a doctor) who was helping the UPS man push his truck out of the snow and suffered a dissection from it. But he said the good thing about dissections is that they will clear up by themselves, unlike plaque-clogged arteries that never clear up on their own and require surgery (endarterectomy)
I came home from the doctor's office and took a seven hour nap. Relief, I guess.
Good luck with your CPAP. It sounds like it severe sleep apnea might be the cause of your tiredness. I had a sleep study in the middle of all this and they said only mild apnea.
Very happy for you!!! Report back on your tiredness and if the sleep study helps. Thank you for your support. This is a very stressful condition. It feels like someone has a gun to your head and you never know when they are going to pull the trigger.
I lifted weights (with a trainer) for several months before my dissection. In fact, the day before I had a mild transient stroke due to my rt carotid dissection,( even though I was feeling lousy and had a severe headache), I went to the gym (and also to the hairdresser). However, I'm not sure this was the cause of my dissection. It could have been a lot of other activities. I never had the pain in my neck that signals a dissection. Just headache and felt lousy/lethargic/out of it. Self-medicated with Excedrin which possibly prevented me from having a major stroke (all the aspirin in Excedrin).
They put me on Plavix in the hospital and even though my doc said my dissection has resolved he said I should continue on Plavix for a year since that was the "Standard of Care". I'm taking a baby aspirin, too. Cvering all bases. He said fine. Don't know what factors enter into the decision to use coumadin or Plavix with each pt.
Good luck finding a center for CAD. There should be some good ones out there. Cleveland Clinic or Mayo? I'm fairly satisfied with local treatment but if my CAD hadn't resolved, I'd search for second, or third opinions.
I am new to this forum and grateful to have found this. I am a female in my early 40s and recently learned I had a ICAD at C2 with a subsequent small aneurysm. This after almost a year of an "inner ear infection" and a six week period of LE weakness on the opposite side of the dissection which was diagnosed as a running injury and physical therapy was sought for strength training. I am on aspirin only. My biggest complaint is a burning sensation on same side of head and neck as dissection. I had dizziness and an imbalance that I just learned to live with. That seems to be getting better. My ear pain is improving and the pulsation in my ear is decreased. I was restricted to indoor running but am able to workout (no yoga, no chiropractor, no ceiling painting, and still scared to lift weights).
I realize how fortunate I am. This experience taught me that we need to listen to our bodies. My ENT doctor did everything right including ordering an MRI...the diagnosis simply got missed by the radiologist until further testing was done.
thanks to all of you that contribute to this blog.
This forum is unbelievable! I can't believe that I stumbled upon this accidentally when looking to see how long it takes to have a CAD heal. Seems like there are a variety of times. I tore my artery mountain biking in October. I had an MRI a month and a half after the injury in December and they did find that it is starting to heal. They have given me clearance to run and to not lift anything over 30lbs. Is this the correct information? When it first happened I was not sure what was going on. I thought it was a reaction to medication I was taking. I ended up going on a trip to Dubai for a week for work and couldn't figure out why I was so light headed and forgetful of words. I came back and told my wife to take me to the ER. They gave me an MRI and CT Scan and the results came back that I had a CAD, a pseudo aneurism which caused a small stroke in my frontal lobe brain. I was suffering tremendous headaches at the beginning. They prescribed Vicodin and then switched to Flexeral which seemed to do the trick. After two months the headaches have for the most part subsided. I still get light headed from time to time when I over do things. I have just learned to deal with that. Also if I am too active my face will suffer from tingling in my face as well as pain in my neck on the side of the CAD. I have been nervous to do anything active until this week. I went jogging for two miles on Monday, rode a stationary bike on Tuesday for 20 mins, and did the elliptical for a half an hour yesterday. I accompanied this by lifting 20 lb arm curls afterwords. I was completely worn out afterwards and still suffering from the numbing sensation in my face and pain in my neck. Is this something I should be worried about or should I just take it easy and not try to do so much? I am worried that the Neurosurgeon does not know enough about my diagnosis. Any thoughts out there? Thank you very much to whomever started this forum. It has given me a tremendous amount of information about what happened. More than the doctors so far!!!!
Yes I have had the same symptoms. Post injury I had headaches and dizziness. After two months the headaches have vanished but I still get light headed as well as numbness and tingling in my left side of my face. This is the same side as my torn CAD. The artery has started to heal after the first scan and I return for a 4 month scan next month. Not sure what will come of it. I hope good news. I find that if I overdue it, that I get the lightheadedness back as well as pain in my neck. Do you have the same symptoms? I used to take Vicodin and now I just take 325 mg of aspirin a day. If the headaches are really bad then I will take a single dose of Tylenol. That is it though. Anything else that works?
Hi...Glad to be amongst like-minded folk. Diagnosed with internal left carotid artery on 51st birthday following blindness in one eye a few minutes after go-karting. A clot had formed and blocked my retinal artery but excellent work from on-call orthopaedic NHS consultant resolved most of the vision issue..3 hours of intensive work at midnight and beyond. CAD diagnosed by MRI the following week following investigations into cause of clot. Completely occluded. Unlike some I spent no time in hospital and the diagnosis of stroke just floored me. Previously fit and well and non-drinker, non-smoker. Obviously restricted with driving and work but the brain needs recovery so trying to relax (its not easy though is it?). So encouraged to hear of many peoples stories and their three month scans (I have been promised similar) but having doppler scan in two weeks. I feel I am being well looked after and know I am already on the road to recovery....but sometimes I guess the road may not be the expected direct route, but its sometimes fun to explore. Good luck to all previous writers and I hope future ones find comfort in what they learn from an excellent forum.
Well, I'm really no expert but here's how it has gone for me. I hope it's helpful. I had my symptoms (transient left sided paralysis) on Sept 18th, 2013. In the hospital, after my diagnosis, they told me to "take it easy" for 3-6 months and the vascular surgeon said they would do a doppler in his office.in about 3 months. My PCP the next week told me not to drive for 3-6 weeks, not lift anything, not to bend over, avoid sneezing, coughing, straining, etc. It was helpful to have these guidelines. He never mentioned lb limits to lifting but I assumed nothing over 20 lbs. My dog is strong and pulls on her leash so I hired a dog walker for her. I really tried to be very cautious. I don't know what caused my CAD and it could be something random or trivial. I didn't drive until after I saw my vascular surgeon in mid-Dec. When I got that doppler my vascular surgeon said my artery was clear and I had"no restrictions". But....I'm still very cautious. The clot apparently has dissolved and that's why my artery is no longer occluded but I think the artery wall must still be somewhat fragile. I had previously been doing strength training and walked/ran on a treadmill, kayaked, lifted heavy stuff, etc.. Now I am only doing 20 minutes on a treadmill daily and plan to work up to more....very slowly. I've had lightheadness periodically that I think must be related to the CAD (I never had lightheadness before) and I've been really tired, although the tiredness has gotten better and is not as bad as it was in the beginning. I have some problems retrieving words or names - not too often but once in awhile.. .I think that might be related, I recently have had some periodic pain in my neck (rt side) and mild headaches which I hope are sinus headaches My sense is - as a layperson - that if symptoms recur after exercise, you are overdoing it. Best to get back into an exercise routine slowly. again, that's me. I don't think I will ever do yoga again (neck stretching), or kayak, or - most assuredly not jump on a trampoline. I'm on Plavix for a year. Good luck!!! It's a terribly scary thing. Makes you face mortality and requires modifications in thinking and behavior - at least until your body tells you that you are OK.
Need some help from all of you. I'm a 38 year old male. Play ball or run three times a week. For the last five weeks I have had a headache (which never climbs higher than a 6 if a 10 is a migraine, resonating from my left temple that spreads across my scalp, down to my jaw, behind my eyes, and behind my ear. I feel like I am on a boat, have a hard time focusing of an evening, and am very fatigued. My neck is stiff and the left side of my face (check and eye) tingle and feel swollen. It is tender to touch the left side of my face and head. Five weeks ago the symptoms began about 2 in the afternoon and grew more frequent and started earlier. Now they are constant but I feel my best in the early morning. I have had an MRI and it stated that my brain was fine. Has anyone else had these symptoms? What are your suggestions for me? Husband and father of two - scared.
You definitely need more medical testing. An MRI by itself might show nothing. What about a doppler to detect an obstruction in your carotid due to a clot forming after a tear?. Headaches should not go on like that. Your physical state has changed. I felt strange/fuzzy for about a month before my symptoms got worse....headaches for a week and then a clot broke away from the occlusion and caused temporary paralysis in my left side. Rt interior carotid was occluded 95 percent. Don't let this continue without further testing and a dx.
I'm glad to have found this forum. In November, I started having terrible headaches. The kind that would wake me in the middle of the night with throbbing pain and nausea. Several visits to the doctor resulted in misdiagnosis of sinus or migraine issues. After having temporary loss of vision in one eye and 3 MRIs, they determined dissections.
I was admitted to the hospital in December (it took several weeks to determine the cause of headaches) where I had an angiogram. Shockingly, I had 4 dissections! Both carotid and vertebral arteries leading to the brain were dissected. Miraculously, I didn't suffer a stroke. I don't have a trauma or event that can be linked to the dissection. I was extremely fit, running most days and doing cross fit exercise.
I've been on Plavix, aspirin, and blood pressure medicine to allow healing. At the 3 month mark, I had another CTA. Dr feels I am about 90% healed but continued me on meds and exercise restrictions. I am only allowed walking....no running, weights, lifting, etc. At the 5-6 month mark, I will have another CTA and hope to come off the medicine. I still have the weird twinges in the head, neck and ears. The awful whooshing sound finally stopped at about 3 months out.
I know it is very rare to have 4 dissections. What tests should I ask for to determine an underlying issue? Has anyone heard of Cross fit causing dissections? I've seen a few specialists but everyone is hesitant to do anything til I'm fully healed. I don't seem to have any indicators for Marfans, etc. although FMD might be a possibility. I'm thankful to God to be here and glad to be feeling mostly normal. Thanks for any insight others can offer on underlying causes.
Good luck to you!!! I had my rt interior carotid artery dissection 6 months ago. No attributable cause. Headache for a week before sudden left sided paralysis. . Very active lifestyle, wt training 2-3X week, etc. Have always had low blood pressure, no other physical problems. I still have some weird raw/sore or stabbing sensations in my head, neck, temple, particularly when lifting groceries or exercising too much.
There's just not that much information available because CAD is a rare event. Frustrating!! My personal, subjective opinion is that these "spontaneous" dissections must be due to some pre-existing anomaly in the artery, a weakness in the artery that is not one of the syndromes (FMD, Horners, Marfans) that is discussed in the medical literature. Many people who get these spontaneous dissections are youngish, healthy, very physically active people. Also, primary care doctors often have never seen this condition, ordinary people have never heard of it. It's hard to get definitive answers. If you have had four CADs, I'd say definitely there is an underlying condition causing this, it's not a random event. But getting a test to determine a cause is going to be hard. I'd search for answers, consult the best experts in the field. But finding them is hard!! And sometimes they disagree. There is an aneurysm center at Hopkins where a friend of mine who had an aneurysm (not CAD) was treated successfully. Some place like that - multidisciplinary - like the Cleveland Clinic or Mayo Clinic might be able to help.
The only exercise I do now is walking on the treadmill. I lift groceries, etc. but am careful. I drive but still am careful about turning my head. If the symptoms (twinges, stabbing pains) go away completely at some point, I'll increase activity. After a year I'll be off Plavix.
I experienced a spontaneous left carotid artery after I had receieved unwanted pressure on my neck.That was back in 2000. After a severe headache and disorientaion for 3 days I finally went to my GP who noticed that one of my pupils was a lot more dilated than the other, She had me in hospital very quickly where the main specialist decided that I had a migraine, and with 12 students arlound my bed, explained how he knew that. They wanted to do an mri before I went home, but they put me at the end of the queue until I said I was leaving because I could manage a migraine at home. The MRI happened and a severe CAD discovered which immediately changed my medical position in the queue. I take clopidogerel, and bp tabs, and leads a fairly normal life, though often with pain. Now at 14 years on, the pain has increased a lot, I know hey cannot operate, so I deal with it as I can Every evening I take 1 or 2 mersyndol which enables me to sleep through pain, and am doing okay, but I feel I could be coming closer to my use by date going by pains I experience.
I wanted to report and give hope to all who have experienced carotid artery dissections. I am almost 11 months post rt interior carotid artery dissection. Finally, I am symptom free. I had intermittent stabbing pins on the right side of my heard, face and neck until a few weeks ago. My doctor was clueless about why I had them. Finally, I feel like my old self. Hope this gives hope to everyone who went through this awful experience..
I was wondering this also, about the BCP. I have been on them due to extremely heavy periods and have hated being on them. (I am off them as of my Dx, and may very well menstruate to anemia as I did before...) My ICAD/O was really out of the blue. I can say I had been taking ibuprofen for two weeks prior due to some neck/shoulder pain on the opposite side. I don't normally take stuff, am very healthy, etc.
I'm am very happy I found this site. Sept 16 2014 I fell and twisted my body. The following week on Monday and Tuesday I had facial pain that my Dr. thought to be trigeminal pain. Wednesday, after work, I was struck with worst headache ever as I unlocked my car. In less than a minute, the painful throbbing heartbeat sensation just below my shoulders shot up the back of my neck and across the top of my head causing a temporary blackout. Coming to a few minutes later, I knew I needed help. Fortunately an ER was across the freeway from where I work. When I arrived, my BP was 219/119. After an xray and three hours of treatment they sent me home with a diagnoses of sudden-onset occipital headache. The next night the same occurred again with a slightly lower BP. This time I was diagnosed as having a migraine attack even though I told that I knew this was not one. I have had those all my life. That weekend I visited my daughter and son-in-law (a neurologist whose specialty is in strokes). He got to see a full blown attack. Arrived home Monday night. Went to work the next day but felt awful. Again Tuesday night back to the ER. This time my husband let my son-in law know that I was in trouble again. He spoke with the attending ER doctor and insisted that a CAT scan with contrast and a lumbar puncture be done. The ER Dr. saw nothing and once again sent me home with a "migraine" telling me not to work the rest of the week. The next morning as soon as a Dr. whose specialty was reading CAT scans came on duty he looked at my scans. At 8:16 that morning the attending from the night before called saying that something was found and that he was calling my regular Dr.By 8:30 he had called back saying that they were going to call to have me come in that day. I walked out of her office with a diagnosis of a carotid artery dissection and a handful of prescriptions. The next day I saw a neurologist and walked out with more prescriptions. I now take 6 meds to control BP. I experience a few stroke like symptoms but they are not consistent (trouble with right leg sometimes, visual issues, and when my head hurts there are issues with communication). It scares me to think where I might be if my son-in-law had not insisted on that CAT scan. So far, I have had 4 ER visits and should have gone 2 other times. I am so grateful to him and the doctors who are helping me to get through this.
These posts have been a true encouragement. It has also opened my eyes to the fact that I need to take this more seriously but that there is an end to the injury.
UPDATE Hi Everyone I first posted here back in November 2012 because I had googled my symptoms which led me to this page. I'm in Scotland and GP's have been useless. I started doing my own investigations because I was told I did not have pulsatile tinnitus and that I had normal tinnitus and a headache. No one took me serious and every doctor tried to separate my symptoms. I found a private neurologist and asked to pay for an Mra/Mrv, it was read as normal. I was still convinced something was wrong because I'm still suffering from the exact same symptoms. Two weeks ago I sent my scan to a doctor I found in New York. He called last night to say I have a vertebral artery dissection. It happened in October 2012 while painting my ceiling.
Thank you Craig,
I too have been diagnosed with the same thing, woke up one morning with a killer headache that wouldn't go away but I had my grandson and didn't want to scare him so I didn't go to the ED. He went home the following day and the headache had let up a little bit but was still pulsating. I was taking excedrin sinus in hopes that the caffeine would keep it under control, it took the edge off but that was it. After calling in sick for 2 days, and the headaches gradually getting worse, I finally drove myself to the hospital ED, being I worked there they put me in a bed and started the test. I had blood test, urine test, spinal tap, CT scan and a MRI. I think it was the CT scan showed the main artery on the left side of my neck was closed off and the smaller one was about closed off, they rushed me to a nearby hospital that had a better CT scanning machine in which that one showed my artery was actually dissected. They were determined that I had been in an accident but nothing had happened! So they told me I had a spontaneous interior carotid artery dissection on the left side of my neck. They put me on warfarin and are in hopes it will heal itself, the headaches are still pulsating, some days worse than others, I have been out of work for a month now but am going stir crazy. I think my Dr. is going to let me go back for half days to see how that works out. One of my co-workers told me the other day that she would be going nuts sitting at home with "just" a headache! I wish this was "just" a headache, it would be so much easier to deal with. Your story made me feel much better and like I wasn't being paranoid, whining or that maybe it was "just" a headache.
Hello fellow CAD sufferers! I am glad to have found this support group. I had a slip and fall last Nov. 2014, and hit my head on the ground/gravel. Had CT Scan, but negative for fractures. Diagnosis were concussion, neck sprain and hematoma. After few weeks, my headaches and neck pain was so severe and was radiating to my shoulders and arms causing numbness and tingling, and was referred to neurologist. Neurologist said I had post concussion syndrome. He requested for MRA for both brain and neck, results came back as possible carotid artery dissection by the radiologist but neuro said carotid stenosis. Neurologist then suggest to get another MRA in six months, but I went back and saw him after a week due to chronic headaches and neck pain. He then prescribed neurotin and baby aspirin,and requested for another MRA Intracranial. I had VNG testing for my dizziness and results came back as labyrinthine concussion and needed vestibular therapy. But neurologist hold off on the vestibular therapy due to risk of neck movements, saying my condition as suspected carotid artery dissection, he then change my dosage to aspirin 325 mg to prevent blood clot. I was referred to neurosurgeon, and he said to wait for another 6 months to have another MRA, he stated dissection should heal by itself. For the meantime, here I am wondering when this carotid artery will popped, I feel like the medications are masking my pain. Just wondering do I really have to wait 6 months to wait and see if it heals? Even if I have physical and massage therapy, my headaches and neck pain don't go away, I believe my headaches and neck pain is not post concussion syndrome anymore but CAD. I used to be active and energetic, after the injury, the pain was draining my energy, it was very depressing, frustrating and disappointing. Who specializes in CAD? Is it neurosurgeon or vascular surgeon. I was thinking of getting a second opinion, but just wondering if it's norm to wait for 6 months?
I was diagnosed with a coratid artery dissection on my left side after a headache I could not get rid of. They put me on 325 aspirin and 5mg of coumadin for three months. I am an active, healthy 45 year old female. I continued to exercise but no lifting of weights or running. Stuck with walking at stationary bike. At my 3 months follow up CAT SCAN with dye it was found that my artery has now completely closed. I am very uncomfortable with this. They have checked blood flow to my brain and it is good with 3 arteries. Has anyone ran into this???
I have read about the whooshing sound on the FMDSA site. I think it relates to the carotids. I believe for them to really see what is going on you need contrast. CTA or MRA. I had a CTA to diagnose me with FMD.
I would go to Mayo and see Dr Hayes or at least have a local dr order a CTA. You may have Fibermuscular Dysplasia. I had SCAD and it has been determined that I and many other SCAD survivors have FMD which is a connective tissue disorder.
Hi. I had a right side extensive internal carotid dissection in January. I suffered from killer headaches on and off for 3-4 weeks which started subsiding over subsequent weeks. I also initially had some visual disturbance in my right eye. The specialist told me that these were all "local" symptoms and not TIAs/mini strokes. Like you, it seems as though the artery was completely occluded. I had a follow up scan at 3 months and it showed no resolution and I have just had another at 5 months and although I haven't seen the specialist yet my amateur diagnosis of the scan (I asked for the disc with software and pictures on it) indicates that it looks exactly the same (I.e. no resolution). Like you I'm quite concerned - how long do these things take to resolve? The specialist didn't seem too concerned saying I was an otherwise healthy person. I'm on 300mg aspirin per day.
Jenny, I am new here. Please get another opinion from a neurologist about your carotid closed for could it create a stroke. I had a carotid dissection in which a piece of the artery tore off and lodged in my brain on Jan 2015. As a result, I had a stroke, brain damage and with Aphasia.
The dissections usually happen with almost no warning signs. My dissection was possibly caused by a cough or sneeze. I fight everyday hoping to get back my speech and reading abilities that I once had. Don't hesitate finding a different opinion.
I'm in Australia where unfortunately my dissection hasn't been taken seriously. I've had two CTAs, one MRI and because I am very fit with low blood pressure and I'm peri-menopausal the two specialists I have seen have fobbed me off. In fact, both ushered me to the door so I couldn't ask questions. The first specialist insisted that the dissection was due to a chiropractor (which I have never seen!) after telling me he had to consult 4 colleagues before seeing me and made a comment about me being very slim, the second specialist thinks it was spontaneous due to a family history of strokes (my grandmother died of a stroke at 50, I am 49). They claim the thunderclaps, neck ache, dizziness and headaches are not related to the dissection despite me reading otherwise. Neither were interested in follow up, I've been told to take baby aspirin (but that's up to me!) and one urged me to return to exercise but then got confused about how to keep my BP down whilst exercising! I feel like a hypochondriac but I'm terrified it will happen again and I will have a stroke
I am in the same boat. I am an otherwise fit and healthy 36yo woman. Following months of severe headaches that were being dismissed as migraines by my PCP, I finally went to the ER in July 2014 when a sneeze brought on stroke symptoms. It was then that I was finally diagnosed with a left internal carotid artery dissection (intracranial) via CTA, with an MRI confirming a resulting stroke. After several days in the hospital, I was put on coumadin and released, being told that it should heal within 3-6mos.
A follow up CTA in December 2014 revealed no improvement, and a follow up cerebral angiogram at Cedars-Sinai in April 2015 revealed that the artery had completely occluded. My doctors have told me that there is nothing more that can be done, that risk of repeat stroke is lower with complete occlusion than with partial occlusion, and that I am getting adequate collateral blood flow from the right side to compensate for the closed artery on the left.
I agree that it is hard to accept that this is okay. I have literally sought out second and third and fourth opinions! I still struggle with daily headaches/migraines, that are made worse by exertion and/or increased levels of stress. I can walk for exercise, but get severe headaches 'in that spot' if I try to lift weights or get my heart rate up too high. I also regularly struggle with episodes of blurry vision and lightheadedness.
I have been instructed to continue with daily aspirin indefinitely, stay on a statin (Lipitor) to prevent any blockages on the right side, and to make sure to stay hydrated as dehydration could negatively impact blood blow. To ensure adequate blood flow, I've also been instructed to avoid vaso-constrictors (which most migraine meds are) and to avoid anything that would dramatically lower my blood pressure (which many headache prevention medications do).
All of the neurologists/neurosurgeons/neuro-vascular docs say the same thing... that I *shouldn't* be in danger of another stroke if I follow the above instructions and that I *should* be able to return to most activities in time, with perhaps the exception of sports like scuba diving. None can say why this happened, none can predict how long it might take to feel better, and none can explain why I have the headaches.
I am hopeful that in time my body/brain will adjust to this new normal, that the headaches will resolve, and that I will be able to return to my former active lifestyle. And, I hope that you are able to achieve the same!
Really pleased to find this forum. Information is difficult to come by. I'm another case of a very healthy very active middle aged female (55) with an unexplained left internal carotid dissection, from Australia.This is my one week celebration. Had a TIA on 24 June 2015, took a taxi to the emergency dept, an immediate CT, then an MRI 36 hours later (no stroke, as diagnosed by MRI). Artery was totally occluded; Doctor was surprised. Drs went straight to IV heparin at the hospital, then injectible clexane while my warfarin dosage is being stabilised. Got out on the 28th. management is warfarin for 3 months then scans to check the artery healing. Very low bp normally (110/67) but when I get pressure behind the right eye I can see my bp go up to 145ish. Only lasts about 10 minutes, and no accompanying limb numbness so haven't taken myself back to hospital.
A couple of questions for those further along;
1) My left neck, jaw and temple are all in more or less constant pain, especially in mornings (4/10 on the pain scale). Can I hope/expect that will recede?
2) Anyone have experiences with multiple TIAs while in this critical 4 week period? It is what I am particularly watching out for.
Thanks in advance for any shares.
Has anyone been diagnosed with Horner Syndrome? My MRI showed no carotid dissection but I have been diagnosed with H. Syndrome, following intense side of neck pain, headache, and pulsating tinnitus, which lasted for almost two months. My remaining symptoms are a droopy eyelid (ptosis) and no sweating on right side of forehead. Thanks, everyone, for sharing.
Hi there, very interested if you have had subsequent mri's over the years and what info they have given you concerning your present condition and future prognisis.
I had bilateral ICAD almost 3 years ago. Unfortunately my left and right arteries have not reformed/ remodelled and my most recent mri has confirmed no improvement . I continue to have headaches, diziness, fatigue, memory difficulty etc but am dealing with it. My consultant is reluctant to operate due to the location of the dissections ( in the c2 area )
This is why i'm anxious to communicate with someone who has had CAD for a long period and exchange stories, info, etc.
Happy to have found this community. I am a 69 Yr old married male who suffered a CAD and stroke about 2 months ago now. Fortunately I have no residual deficiencies though I suffered about 4 or 5 intermittent (10-15 minute) periods of numbness and loss of control in my left hand and leg over the 3 day period following the incident. It took me that long to realize what was happening as I had recently had steroid injections in my spine to relieve back pain and thought that was causing the problem at first. I went to my PCP and he sent me to the Emergency room of the local hospital for testing. While in the Emergency room I suffered another of the 10 minute numbness incidents in my left arm and they ordered a CTA. I was routed to the ICU by the resident Neuro-interventionist where I remained for 3 days. He explained that my right carotid artery had a dissection and was completely blocked. He was surprised that I hadn't suffered more severe and long lasting symptoms and indicated that further problems could occur - hence the ICU. I underwent some additional testing, including a CTA of my chest, MRI and sonar of my chest to try to verify the Dissection as opposed to blockage from heart based debris. My blood work was positive with no significant factors out of range. I was put on Plavix and Aspirin-325 in the ICU and remain on it today - Following a temporary interruption of Plavix due to a significant reaction which was later mitigated by some other medication. Anyway, the cause is still a mystery - other than some possible work I was doing to replace a ceiling fan at home. I am on Plavix(75) and Aspirin(325) until the 90 day mark when they will do another CTA to see if there has been any healing. They say I will be on Aspirin the rest of my life and are waiting to see how long the Plavix will be needed. They also put me on Lipitur (40) due to my age though my blood pressure is only on the high side of normal and cholesterol is within limits.
My story is fairly similar to yours. 43 yr old M, Rt ICD July 2014. headache prior to the dissection. Had transient loss of vision in my Rt eye followed by transient left sided weekends. Diagnosed with Rt ICD, was on Revaroxaban for 6 mths and now on Aspirin 100 mg. done well for last one year apart from whooshing sound on my left year (doc says due to increase flow in my Lt carotid) as the Rt is completely occulded. Now for the last few weeks bit blurring in vision/ mild headaches, mild dizziness. Last CTA/MRA did not show any changes. Any further guidance would be appreciTed.
An Update: My 90 day CTA shows the Carotid is still 100% occluded. No change here at all, unfortunately. It also showed up the cerebral infarction. They had me do a stress test 3 weeks ago snd it showed a 48% ejection rate so I failed. Now they want to do a catheterization to see what is going on in my heart (which has some indication of an earlier heart attack. Waiting on this until I see my Neurologist to understand the level of risk that they will knock something loose in there and take me out. We shall see...
My story is fairly similar to yours. Rt ICD July 2014. headache prior to the dissection. Had transient loss of vision in my Rt eye followed by transient left sided weekends. Diagnosed with Rt ICD, was on Revaroxaban for 6 mths and now on Aspirin 100 mg. done well for last one year apart from whooshing sound on my left year (doc says due to increase flow in my Lt carotid) as the Rt is completely occulded. Now for the last few weeks bit blurring in vision/ mild headaches, mild dizziness. Last CTA/MRA did not show any changes.
Wow... I am having a very similar situation right now... Increased blurriness in left eye, worsening headaches, and increasingly lightheaded this past week. I cannot cross my legs or put weight on my lap without starting to feel faint. Saw my neurologist early this week, but she did not have any thoughts as to what is causing these symptoms. She is going to order a follow up CTA to make sure there have not been any changes since my last angiogram in April. I will keep you posted if I learn anything further!
I'm a 30 year old who just discovered my fully occluded left carotid arterial dissection on 11/14/15. I'm very active; intense physical training at work and a bodybuilding hobbyist. In the weeks leading up to my discovery, I had many varying symptoms which began with me thinking that I had an inner ear infection. I first noticed short bouts of blurred vision and inability to focus but only for a few seconds. Then my ears began to hurt as if I had an ear or respiratory infection. Then I started to feel distinct discomfort (not so much pain) in the left side of my neck. Then the full headaches began and when fully turning my neck to the right heard the notorious "whooping" sound; of course I had not idea at the time that this was a tell take sign of CAD, but it's what prompted me to think I should start looking into it. Finally, a day after being having the whoosing sound dismissed by an urgent care doc I felt dizzier and more out of my norm than I ever have in my life while defense training at work. I tapped out and am glad I did; that night I went to Johns Hopkins ER where they found my fully occluded CAD via CT scan. My collaterals are pulling for me and I didn't incur a stroke. I'm shaken up though; the doctors are urging me to stop my career in law enforcement as well as in physical training in general. I'm devastated and honestly, I can't do that. I just bridged with Lovenox (spelling?) and am taking 5 mg of Coumadin to main a 2/3 range and I'm shooting to do this for 3 months at which point I'm going for more imaging to check my healing progress. I have some symptoms still, all manageable. I'm back at work, I really only took 3 days off- but I'm on light duty and am not wearing my gun belt or bullet proof vest... Both I'm worried will cause extra stress and potentially slow healing. Does anyone have any advice for me? I'm going stir crazy and oddly haven't been able to get any solid answers from my doctors about when I came even walk on a treadmill. All considerations and comments are greatly appreciated.
When I was first diagnosed my doctor said walking would be fine but no heavy lifting and to stay very hydrated. My CAD continues to be 100% occluded and it has been one year. I have resumed light lifting and short runs. My doctor stated I should never do anything that raises my blood pressure too significantly. I have been told there is not a lot of research on our condition, so not a lot of answers. I am currently only on low dose aspirin.
My husband was recently diagnosed with Horner Syndrome. He just had 3 MRIs to determine the cause & they now suspect carotid artery dissection. He goes for a CTA tomorrow to get additional information. My understanding is that Horner Syndrome is a symptom of Carotid artery dissection. I am now wondering if the droopy eyelid & pupil dilation will reverse itself. How has your experience with Horner's been?
My daughter is 10 and in Sept (4 m) ago suffered a CAD with stroke while on the trampoline. We I have read many posts here and am so glad I found this site. We are experiencing many of the same issues. One Dr says the trampoline did not cause it and one Dr says it did? No one can tell us what the chances of re occurrence is. Her dissection closed/re sealed completely on its own. She takes a low does aspirin daily as they did not want to put her on blood thinner due to her age and did not want to limit her activity. Her blood work all came back with no markers to cause the episode. She had major left side droop and and her speech and thought processes were effected. She is now 100% recovered. Dr says this is due to her age and her brain being able to adapt better than an older person. She has legions in the sensory part and the motor parts of her brain but passes every test the Dr.s give to her. They are shocked at her recovery. BUT no one can seem to give us a clear understanding of what she can and should not do. She is 10. Long time of life and activity and we need some guidelines. We have been told no contact sports ever (cannot risk concussion). She can cheer but she cannot be lifted. We were told she can do gymnastics. But nothing with any abnormal head movement. We were told she can never have a traditional chiropractic adjustment EVER. Of course we do not let her on the trampoline but we have a long list of questions. Can she ride horses, can she dive, He said no roller coasters for now. What does for now mean?......Risk of re occurrence.... Our neurologist did not feel qualified to answer so he is having us go see the surgeon that (ruled out surgery) to answer our question. She is happy, athletic and healthy and do not want to treat her as a sick kid. Right now if you met her on the street you would never know this traumatic thing happened.
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