Interior Carotid Artery Dissection--Who Knows Their Stuff?

[bigangel]

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.

[jennyd5]

I am headed to U of M vascular clinic, if I find out anything new I will pass along info!!!

[karinb55]

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.

[Bridget44]

Hi Jenny,

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!

[annieh65]

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

[Scottw1968]

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.

[Nathalien1983]

You have come a long way and God will see you through. Keep fighting for it

[Pete_f]

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.

[danielle6849]

Mine never resolved. It's been ten years. After 3 years of regular contrast MRIs, they decided that the dye was doing me more harm than the dissections. I continue to take aspirin and have not had any continuing care. However, I am on this site because I have been having numbness in my right ear and was thinking of heading back to Penn for a follow-up. My issues are due to MYH11 mutation.