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.

[tarapatiki]

Thank you so much.  You know, they tell me not to  wonder about the cause of all this (but I do) and the day before this happened I had my hair done, leaning over the basin to get the color out. That is something I've done for years without a problem, but I do wonder.

Thank you for your reassurance about recovery and your prayers.

[Ladydi18]

Best of luck  to you.  Give yourself time.  You will be fine.  I had my right carotid artery with a stroke 17 months ago and I am doing just fine.  Symptoms have all gone away now.....but I am very careful not to lift anything heavy or do anything that will strain.  Mine happened from hyper-extending my neck so I am very careful about that.  You tend to learn what you can and cannot do.  I am feeling great now.  You are in my prayers.

[tarapatiki]

I am a vegetarian, active, non-smoking, normal wt  71 yo female.  No diabetes, bp is on the low side, etc.  Two weeks ago I was kayaking with a friend, lifting my 40 lb dog into the car, going to wt training 3 x week etc. etc The wt training had made me strong.  Maybe that was a mistake because I lifted alot of heavy stuff, hoisting stuff into my SUV.. I haven't eased gently into old age :)

Then I had a low grade headache that wouldn't go away and I thought it was sinus (allergies, whatever). One night it was so bad I couldn't sleep.  Next day, I felt good, headache gone. Went to change sheets on our bed.leaned over to lift up the mattress and fell over, paralyzed on left side.  called 911. Paralysis was gone when the EMT's came but they took me to the ER, anyway.  ER did a CT scan, saw "something" on the rt frontal lobe and admitted me. Daughter, a doc, thought that was amazing :since they rarely see anything on the CT like a stroke  -a CT  is not that sophisticated.  Next day they did every possible test and I was fortunate, in a way, with my age they took this "TIA" seriously. MRI, MRA, CT/angiogram, doppler, trans-esophageal something.

Bottom line : carotids were totally clear of plaque, heart was good.  They found a rt interior carotid dissection way up by the skull.  Occlusion around the dissection and a clot had formed in the part of the carotid that had "peeled away".  In hospital for 5 days. during which time I had the worst headache of my life one night . Everyone was great but discharge instructions were vague.

I have no paralysis or speech or mobility problems.  I'm very fortunate.

Went to PCP with doc daughter a few days after discharge.  PCP said he had rarely seen this condition and said there's not much literature on it.  Asked him about functional limitations.  He said: no driving for 3-6 weeks, no lifting, bending over (squat is OK), no straining for BM's,  and -yikes - no coughing or sneezing. I have to keep my head up and not turn it suddenly.  Can't do anything that would make a piece of the clot break off and go into my brain.  Basically said lots of limitations for 6 months at least.  I have cancelled travel with my husband (3 trips this fall) due to problems with lifting a suitcase, being jostled in a plane, jumping off a train to the platform in NYC, that kind of thing.  .

I can - and should walk only for exercise.Can't walk the dog because she might pull.

All this really *****, but to be honest all my functions are intact..  Good luck to everyone who has had this!   I never heard of this dissection problem before, my carotids are clear of plaque.

[albatrossklr]

i was hit by a car while riding a bicycle. I know the moment when my artery dissected. there as a hot poker feeling that went from my neck all the way to my left eye. That was 2004. Today, i wear a fentanyl patch and take oxycodone 4-5 times a day just to function. Sometimes the vision at the center of my left eye blurs, sound makes me jump and smells send a sharp pain through my left temple. There are days even with the opiates where i hide in my sensory deprivation room (laundry room, very very dark) for hours. I try every treatment that comes down the pike and as insurance companies will not pay for off label treatment the co$t$ are out of my pocket. Sorry i do not have uplifting news, but not everyone gets completely over a dissection..

[tspatel]

Hi,

I had an right internal carotid dissection about 1.5 months ago along with associated narrowing of the right vertebral artery.  I think it happened when I was lifting weights at the gym because I started getting the worst headaches of my life about half an hour after that.

I'm just trying to see what could have caused my arteries to be susceptible to tearing - all my inflammation tests are negative, I don't fit the bill for Ehlers-Danlos, etc.  The only thing I can think of is birth control pills - I started these about 7 months before the dissection (stopped it immediately afterwards).  Has anybody been on bc pills when they got their dissection?

Also, has anyone here taken Xarelto (Rivaroxaban) instead of warfarin?  My doctor switched me to this because my INR levels on warfarin were fluctuating too much.  If so, any feedback on this medicine would be greatly appreciated as it is relatively new and I cant seem to find too much out there.

Finally, does anybody know what the best centers/hospitals for treating ICA in the US are?

[Quaker1]

I saw Rehab Doc who deal with after stroke patients and what he told me: new nerves grew 1 mm per month and this is very painful to tolerate but it is important part of the healing process as nerves trying to develop and find their way into body/muscles, so he told me be prepared for that. May be it is part of what you experiencing now, time frame from 3-24  months. Of course consult with your Rehab doc nor just neurologist.
Hope it helps.