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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.
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Avatar universal
I'm 40, great BP and at an OK weight, healthy.  My rt. side dissection presented with Horner's Syndrome, but I'd been suffering from flashes of intense transient pain in my right ear and jaw for about 2-3 months prior to Horner's appearing. In Horner's syndrome, one eye has a tiny, mostly unresponsive, constricted pupil and the lid droops (ptosis). In the weeks prior to me being hospitalized I'd been suffering from influenza with lots of coughing; the MDs are guessing that the coughing exacerbated the dissection. I have an extensive tear/dissection in my rt. carotid artery--both branches of the "Y" where it goes into the jaw/skull are dissected. I am currently on leave from work (almost 2 weeks since I got out of the hospital). I am on aspirin and plavix + exercise/activity restrictions. My headaches have gotten better, but if I get a "twinge" I stop whatever I am doing and sit down. Sort of feels like a time-bomb is lurking in my head/neck...but so far so good. I am SO thankful that even though I have such an extensive dissection and almost full blockage, I did not suffer a massive stroke. Apparently the other arteries feeding my brain are somewhat adequate for transporting blood to/fro. I have the standard follow-up appointments scheduled + MRA at 6 months. I don't think I'll be doing yoga again as I have a hypermobile neck and the chances of something bad happening are too great. I'm going to start a gentle walking regimen as soon as I am cleared to do so.

My list:
- no lifting anything over 2lbs.
- rest, rest, rest
- no driving 3 months
- no exercise aside from walking
- do not lower head below knees/bend over too far
- keep bp steady if possible
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Avatar universal
Hi,

I am extremely grateful to have found this page. I am 20 years old and have recently been diagnosed with a CAD in my left neck. I am quite young for this condition to happen, and the specialist has said I would have done it while I was on the running machine. I am a reasonably active and healthy person. I am just unlucky to have gotten this, as none of my family has ever had this or abating similar. I was lucky that i went to my doctors the day after having symptoms of a headache/pain in the left side of my face down to my neck, loss of vision in my right eye and slurred speech. Luckily my doctor had seen 5 cases of this before, and had be sent to get an MRI to check. Turns out I did have a dissection in my carotid artery. I was put on aspirin to thin the blood the day after the first initial symptoms so was lucky that I didn't suffer a stroke or have a blood clot in my brain. I have another MRI to check the healing process next week, and then will have another check up MRI in a month to 2 months after that. My artery hasn't changed shape to drastically according to my doctor and the MRI's. The doctor has said it will take 3-6 months to heal on its own, as long as i keep taking aspirin to thin the blood and also paracetamol for my headache which will most likely stay until the artery has healed. I am on bed rest for the next 2 weeks and then have to take it extremely easy for the next 3 months . I was wondering if anyone knew of any supplements or any anything that can help speed up the healing process? I have already been told by my doctor there is nothing I can do other then take it easy and take the aspirin. But if anyone knows of anything that can maybe help the healing process or if eating vegan or extremely clean would help, or taking collagen tablets, anything? please would you let me know, as I would like this healing process to be around the 3 month time rather then the 6 months.

Sophie
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Hello there, literature says it takes 3-6 months, my consultant says 10-12 weeks to heal so I guess it depends on each individual. It has been very frustrating for me and am sure for everyone on here, as I used to be very active. Reduce intake of red meat to once per week, eat loads of clean food and try to carry on as usual. I went for my first jog after 8 months of my CAD and stroke, i was so scared to even move my neck let alone jog or whatever. Mine was caused following mountain biking and 1 hr on cross trainer. Allow your body time to heal don't rush it and STOP reading too much about it. I read everything there is to know about artery dissection and Stroke and all it's done is depress me even more. So eat clean, be active but don't overdo it. Good luck and may God bless and heal you, you'll get there :)
19405061 tn?1477108476
Hi, Speach! I have some questions for you. I'm a 50 y.o. female and 7 days ago, I was diagnosed with a chronic VAD on the left at C4-C5 with a pseudoaneurysm (probably occurred last Nov. when I fell) and an acute ICAD on the left. Within 1 week, I've had 2 CTs w/o contrast, 1 CT w/contrast, 1 MRA w/o contrast, and a CTA scheduled for next week. I realize the first 3 weeks are the most crucial, but isn't this a lot of radiation exposure?

My PCP told me to monitor my BP at home and go back to the ER if my systolic is >130. What's the max. limit on my diastolic, and what's the min. limits on both for an ICAD patient? I normally have low BP (abt. 104/76).

Also, should I be concerned about the pseudoaneurysm in my cervical artery? I've had disc herniation & bulging at C3-C7 for at least 6 years (yes, and have suffered with extreme pain since). Could this have anything to do with my VAD? I'm worried about the possibility of another hemorrhage or rupture of the aneurysm.

I hope you are feeling better. I've been taking neurontin, naproxen, and ranitidine (all at the same time) 2x day, and Tramadol as needed for my constant Level 4-8 headache with frequent Level 10 stabbing sensations, and eye pain (wore sunglasses inside my house and everywhere - even at night). As of Day 6 (yesterday), I've shed my shades, eye pain, and constant headache, and my stabbing pains are much less frequent and painful (Level 2-4). I'm also on a 325mg EC aspirin regimen.
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1 Comments
Hi All, I'm happy I have found you all.Here is my Story,41 yr old male, fit and healthy and have trained hard for years, I.E. Marathon running, Cycling, weights and recently taken up Crossfit.  I had noticed that over the past 4 weeks I had been fatigued with the odd headache, but nothing to be concerned with.  I did plan to get some blood tests to see if there was anything going on.  However, I did some serious HIT workout stuff last  week.  On Monday I did feel a little under the weather and thought i was coming down with a virus, then Tuesday morning I felt some discomfort in my left hand side of my Neck, again, not thinking anything of it and thought it was a swollen gland, I went and did some hard training on tuesday and wednesday.  Thursday morning I phoned my GP who could not see me until Monday!!!  On the after noon I noticed my left eye lid started to droop.  I went to a walk in centre where I was told it looks like a bells palsy attack but told to go the hospital for a check up.  Whilst at the hospital it was noticed that my left pupil was dialted.  i was transffered to a ward where a CT scan with dye was carried out.  The scan came back with no concerns followed by a chest xray.  I was then diagnosed with Horners Syndrome.  When I googled it I Sh!t myself but was please there was no tumours!  It was not until neurology came to see me and then sent me for an MRI with Dye.  I was then diagnosed with dissected cortoid artery.  But the good news is, I have not had any stroke and been told to take asprin for 3 months at 75ml per day.  I was told to basically take it easy for 2-3 weeks then to start some brisk walking or light cycling, so I count myself lucky that I have not been so unfortunate as some of you guys.  Within 48hrs my eye lid has returned to normal, but my pupil is still not 100% but better.  My question now is, will i be able to do the activities I did?  I accept that I will have to make some lifestyle changes and not go as crazy in the gym as i did?  Will i be able to run long distance, cycle long distance   etc?  But, I'm thankful I'm still here, I'm thankful that I have seen the warning signs.  Everyone stay positive and remember, we only live this life so lets live :)  
Avatar universal
Hey all, I'm a medical student so have a pretty unique perspective on the whole thing. I'm 29, no medical conditions, and quite active (Ironman, rock climbing, hiking). I was hiking last weekend and had a fall on a rock onto my neck. I had no symptoms, but when I returned home, I was able to listen with my stethoscope and hear the sound of the carotid artery occlusion, which is called a carotid bruit. I went to an ER, where I had a CTA and was diagnosed with a grade III common carotid artery dissection. Stayed overnight in the neuro ICU while they had me on a heparin IV. I am now taking coumadin with a lovenox bridge, and will have follow up imaging in 3 months.

These carotid artery dissections are pretty uncommon, so there isn't a ton of medical studies to know what the best thing to do is. Plus, everyone's experience with symptoms is going to be different based on where the dissection is and what their specific brain blood flow is like. For instance, mine is in the common carotid artery which feeds both the internal and external carotid. I live in a major metropolitan area and was seen at a Level 1 Trauma Center (ie, the highest level), and the neurovascular doctor had only seen a few such cases ever. Mine is a grade III, which means there is a flap that also leads to partial occlusion of the vessel. (Grade V is complete occlusion).

In general, the best thing for all of us to do is to take it easy and let the vessel heal. The followup is 3 months, so at minimum, no contact activities until then. I will be skipping ski season this winter, for sure.

For the mom asking about long term stuff for her daughter: there is not a definite answer, nor will there ever be. The doctors are just using their gut instinct and are going to be as conservative as possible. They have probably never seen a child with an injury like that because they are so rare, and there is never going to be a study that tests what activity level is reasonable. In the US, people will sue their physician for something that happens 10+ years later. So while it's probably fine for her to resume normal activities after 6 months or a year, you will be unlikely to receive that advice definitively. (Also, without knowing the extent of her dissection, it's impossible for even me to say something like that!)


For everyone else, I'm happy to try and answer any new questions if they come up. It's a really crazy experience to have, for sure.
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Avatar universal
My 46 year old son was just diagnosed with.  

Left internal carotid artery dissection 100% occlusion from biofoforcation to the siphon carotid cavernous sinus..

He is very weak and hasn't had a stroke yet.

Has anyone found a Dr/ Surgeon who can help him. ????  We need immediate help.
Thanks for All Your Help..
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Avatar universal
Very interesting group of findings. I'm an extremely active 56 yo Ironman triathlete and oral surgeon, and my ICAD occurred after a swim workout to the best of my knowledge. No trauma, but the repetitive motion of breathing off my right shoulder is all I can think of what caused it.

Primary initial symptom was a 1-2 sec flash of light in right eye in locker room after swim, no other symptoms, even ran 5 miles after. Noticed headaches that evening. Wife and office staff noticed slight ptosis of right upperlid, but no other visual changes, only off and on headaches. No other neurological changes. 4+ weeks afterward, I was diagnosed with MRI/MRA at right ICAD, sent to ER, admitted and obtained CT angiogram of head and neck.

With total lack of neurologic symptoms,  was discharged only 325 aspirin, eventually will ween down to 81mg. No surgical intervention required.

My questions are: 1. Timing on rescanning, 2. Risk of aneurysm forming, 3. Degree of activity.  

Any comments are appreciated.  I feel extremely fortunate, especially after reading every post in this thread
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I am a 62 year old male who experienced a spontaneous right internal carotid dissection on 3/8/16 accompanied by Horner's Syndrome, blurred vision, severely decreased sense of taste (metallic taste) and intense headaches.  I'm currently taking Pradaxa, a BP medication and a statin. Blurred vision and decreased taste issues continue seven weeks after the dissection. This is my second internal carotid artery dissection.  I experienced a spontaneous left internal carotid dissection on 6/14/97 without a loss of taste or blurred vision following the event. Has anyone experienced similar vision and taste issues?
Avatar universal
I am a 39 yr old man who enjoys coaching youth basketball. On Superbowl Sunday I was coaching my boys, yelling and screaming, then all of a sudden I experienced a hot flash. Immediately following the heat I experienced a migraine. I didn't think anything of it cause i suffer from migraines. BUT shortly after my head begin to hurt I started to see small grey spots in my left eye. It started with a few small specs which turned into more specs. (This is all happening while i'm coaching the game) By the end of the game I lose all sight. The only thing I could see was a grey cloud. I had no idea what was happening to me so I drove myself to the hospital. (I know, that was crazy of me) On the way to the hospital my vision began to come back gradually.


While at the hospital they ran several tests on me. CT's, MRI's and a host of others. They discovered that I suffered a Mini-Stroke due to my ICAD. A piece from the dissected artery flowed in to the stream and blocked the artery for a few minutes. So from now until the Doctors tell me to, I have to take Low Dose Aspirin and Pravastatin (Cholesterol Meds) everyday. Although I cannot partake in coaching and it bums me out, I consider myself a lucky man. It could have been a lot worse.

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Avatar universal
Hi there,
I also suffered a small carotid dissection on 2/5/16 (38 y/o healthy male) and Horner's syndrome was my only symptom, aside from some minor aches in my head and same side ear that I thought were sinus related. I didn't require surgical intervention and am treating with both low dose aspirin and lipitor (cholesterol is fine but doctor wanted to prevent blockages of any kind, including arterial plaque).

To answer your question, my Horner's is going away daily. My pupil starting normalizing within days of leaving the hospital and starting aspirin. My eyelid droop is normalizing as well. Still dealing with some headaches and ear pain from time to time but it's manageable.

Glad I found this, guys. Wish you all the best in your recoveries.
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Avatar universal
I just had a incident in Sept 2015 and today I am only on 325 of aspirin.  I have no history of high bloodpressure or any health issues.  I have not gone back to the gym and do get tired early.  I am waiting for 6 month mark to begin a gym routine, but will not lift anything heavy.  I for the most part feel normal. I do have desensitivity in my left hand still and do feel my left side (where two stints are) is different, but no pain.  I for sure do not feel completely normal, but compared to not being able to speak, type or feel my entire right side, I am happy.  Definitely, makes you realize what is important!
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Avatar universal
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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Avatar universal
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?
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Avatar universal
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.
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Avatar universal
I apologize for the typos; Siri messes me up every time.
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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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.
,
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Avatar universal
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...
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Avatar universal
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.
,
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Avatar universal
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.    
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Avatar universal
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.
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Avatar universal
Request an MRA with contrast. Sounds like an CAD. The doctors saved my life with an MRA with contrast. Nothing was seen on a CAT SCAN.
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Avatar universal
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.
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1 Comments
Yes. I had horners syndrome as a symptom of my carotid dissection. Horners syndrome is a symptom of an underlying issue, not a disease itself.
Avatar universal
thanks for information.  I am headed to U of M vascular clinic and will let you know what I find out!
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Avatar universal
Thank you! I am headed to U of M vascular clinic this month!
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