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.

[24Hoosier]

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.  

[tarapatiki]

Just re-read your post and it is filled with wisdom.  I hope you have continued to mend and feel swell.

[tarapatiki]

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.

[POWPOWJP]

I think the only way they can really tell how badly occluded it is is by angiogram. I am going in for one in 2 weeks because my vascular doctor told  me I was doing fine and come back in 6 months. I don't feel fine. Headaches, tired all the time. I went to a teaching hospital UMD and a neuroradiologist. He will do the angiogram and tell me if he thinks I need a stent. This condition is going through treatment protocol changes.

[para999responding]

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.

[KzooMTBer]

I get stomach cramps to from time to time but I am not on any of the medication except for aspirin.  

[KzooMTBer]

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?