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.

[jojogege]

Thank you very much indeed.

[jojogege]

Thank you very much once again.

[TR1968]

I flew from East Coast to West Coast of the USA and back, still on low MW heparin injections ~ 1 month after a left sided CAD. I was a bit afraid of it, but my neurologist said it was OK. The flight was quite uneventful both ways. I flew again to Europe and back 1 month later, still on coumadine, the flights were OK again.

[Tayaoz]

Hi. I had a left CAD and had 2 stents placed. I flew (only an hour and a half flight) two days after I left hospital.  My neurologist said it was fine. I felt fine before, during and after the flight.

[jojogege]

Dear All,

I am very happy to have found this forum. It is the first one, and very very helpful one to find after my husband was diagnosed with Spontaneous Left Carotid Dissection leading to Horner's syndrome this early November. He was with wrong diagnosed and wrong treatment for two week after having the first symptoms.Given by three doctors, one of them in E&A here in Scotland. However we are mostly grateful and happy for getting right diagnose and treatment eventually. He is on aspirin and special pain killer (type of mild anti depressant) for the pain. Before this accident we were considering getting away at the end of April next year, as we are both foreigners here and we need to visit our families. I would like to ask does anyone has an experience travelling by plain with this condition. Is it dangerous? Any risk of complications? How did you feel during and after flight? Thank you very much for sharing your experience in advance. Best Wishes for the coming Christmas Holidays too.  

[Tayaoz]

Hi, my cad was about 6 weeks ago and I am still off work. I have an appt with my neurologist next week so will find out more then. I am definitely on restricted for about 4 months as I have 2 stents which need time to heal. Am not sure what will happen after that. Because I also have fibromuscular dis
My artery is probably more prone to dissection so am guessing I mite end up permanently restricted. Because yours happened on duty, are you on workers compensation? How are you feeling. Where do you work?