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.

[aalleexx]

Greeting all,

I am long-time reader/first time poster. :)
I am a 37-year-old male and had iCAD with a stroke a year and a half ago.   First, I have to say how much this forum has helped me to stay calm and patient, especially during the initial months.  It definitely does get better with time.  I am a professor at a top U.S. university, so I was very worried that my post-stroke brain won't be good enough to do science anymore.  But, the evidence so far looks very promising.  While I definitely tire more easily, and take longer to do things than before, the stroke didn't seem to impact the quality of my work, or my creativity.   So, for these just starting recovery: be patient and use the recovery time to relax, and maybe catch up on good reading. :)

I also have a question regarding Warfarin vs. aspirin.  My right carotid artery was initially completely occluded, but then after a couple of months, some small trickle of flow was seen on the CTA.  The problem is that this trickle didn't get any bigger over the last year and a half.  My neuro doctor says this is not great, and we should wait and see if it recanalizes, so he has kept me on warfarin (coumadin).  I've also talked to a vascular doc and another neurologist, and they both say, forget it -- it will never improve, so you might as well switch to aspirin.  

Is there anyone in similar situation?  I read a lot of bad things about warfarin on this list, but personally, I don't have too much trouble with it (my INR is pretty stable, so I only need to test it once a month or so).  But, on the other hand, I know that most people are taken off Warfarin much quicker (or are put on aspirin directly).  Anyone who has done research on warfarin vs. aspirin issue, I would love to hear about it before I see my doc next.  

Thanks,
-Alex    

[Carotid1968]

Hi All,

I have started to blog my CAD experience and the after effects. You can read it at craig8686[dot]blogspot[dot]com[dot]au

Replace the [dot] with a . because this forum doesn't appear to allow the posting of URLs.

[woodsd79]

Hey Everyone,

Had my first follow up CTA scan last week. It was at 2 months from the day it happened. The blockage is still 100% occluded but has not extended up any further and the doc says at this point it shouldn't. The "middle cereberal" something artery is showing increased flow where it was greatly diminished before. Thats is why my headaches have gotten better he says. The rear carotid is much larger in diameter as well as another artery coming up to my neck from my arm. He said everything looks excellent and is compensating well and to have another scan in six months. He said keep doing what im doing and do more physically as I feel I can just being careful to not overdo it.

[brmrjt]

My husband seemed to have frequent bowel movements and stomach cramps too.  Doctor said that was not a side effect, but I believe it was.  He said that his stomach sometimes felt like it had its own heartbeat.  Don't know if that makes an sense or not.  Has not had these troubles since he has been off Coumadin.  Our neurologist called it rat poison.

[BryanFAZ]

Hey guys. I had my 3 month CTA and follow up with the Vascular Surgeon. He advised that my CAD has pretty much healed completely which is great news. He suggested I stay on the coumadin through December and have another CTA then. He said that if I argued enough, he would allow me to come off the coumadin earlier. I sometimes still have tenderness in the neck area, and my left eye is still a little droopy (but 90% better than what it was) and the pupil is still a little constricted. Headaches non-existent. I took myself off of the metroprolol 3 weeks ago as I was feeling very light headed at times - much better now and my BP seems fine without it. Looking forward to getting off the coumadin at some point!

Did anyone start to get stomach discomfort after their CAD or whilst on coumadin? I have been getting discomfort mostly between my navel and right hip. I had an ultrasound and CT scan and nothing is evident. May just be a coincidence, but thought I would ask. The joys of turning 40 :(

[brmrjt]

It didn't take long for the coumadin to get out of my husband's system.  Just a few days after being off of it, he felt so much better.  I know they say some of the issues he was having was not a side affect of the medicine, but I believe they were.  He is now taking 325 mg of aspirin a day.  His carotid artery healed, but now 100 % occluded.  I am so glad you do have blood flow and I hope the rest heals soon!