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.

[TR1968]

Hi,

I had a CAD last March, full occlusion on the left side, but luckily no stroke just a really bad headache for a couple of weeks and a mild Horner. My neurologist said that even if the dissection heals, the headache may stay for a long time. The dissection healed completely on the 3 moth MRA, and the headache was practically gone at rest. Nevertheless when I exercise, especially involving upper body workout, I often get a left sided mild or sometimes moderate headache and or neck pain.

[Ladydi18]

Congratulations on life, healing and your graduation.  I have been following this site and your progress over the past few months.  
I had a right CAD with horner's syndrome, a stroke, and multiple mini strokes on May 2, 2012.  I would just like for everyone to know that I got my dissection from a long dental appointment. The ironic thing is, I have been in the dental profession for over 25 years, practicing as a dental hygienist.  I was the patient though.  I had never heard of this through all my years practicing. I thank everyone because this site has kept me sane. As of my MRA at the end of July, it was healing nicely but not yet healed completely.  Good blood flow though.  I go  back for another MRA on February 26th. Keeping my fingers crossed.  At first, the hospital I went to did not discover it...it wasn't until 5 weeks later that I went for a second opinion and they saw it on the MRA. So I was never on coumadin.  I was on the injections of low molecular heprain every day.  I was then taken off of it 3 months later and put on 81mg of aspirin 2x a day, which I am still on.  It has been a long struggle. But yes, you will feel better.  I still have some problems looking "up" with my eyesite.   I still get tired easily.  But I had recovered back the use of my left arm and hand and my eye site which I had problems with at the stroke.  I still have pain in my neck at times.  Wondering if others suffer with neck pain after many months?  I am at 9 months...other than that I am blessed to be alive and feeling much much better....and you will too.

[nurse32]

Hello everyone. A year ago today I had a stroke due to an spontaneous carotid artery dissection. I posted on this forum from time to time to vent and just talk to people in my situation. Well today Im celebrating life!! Its been a long hard year but I made it. Since the stroke I have graduate nursing school and grew stronger and stronger everyday. Im pretty much my normal self going to the gym eating leafy greens being a mom, just being physically and emotionally stable and happy. So for those of you going through this life wrenching situation your gonna make it!!!! good luck to everyone

[jlaker]

I was 28 years old when i had a CAD caused stroke. I am a police officer and was, at the time, in good health. The doctors continue to tell me that
I am in great health "other than the coratid artery dissection and the fact I
had a stroke!" I am blessed my wife took me to the hospital so quickly. I am 29 now and am still on Coumadin. Im hoping the dissection heals itself.
Ive been on light duty since the incident. I really am hoping to go back to normal. I would say the word does need to get out that CAD strokes can happen to young healthy people. I would have never went to hospital. I thought I was just sick or something. Docs say that if I wouldnt have gone i would have severe long lasting affects.

[jlaker]

I was 28 years old when i had a CAD caused stroke. I am a police officer and was, at the time, in good health. The doctors continue to tell me that
I am in great health "other than the coratid artery dissection and the fact I
had a stroke!" I am blessed my wife took me to the hospital so quickly. I am 29 now and am still on Coumadin. Im hoping the dissection heals itself.
Ive been on light duty since the incident. I really am hoping to go back to normal. I would say the word does need to get out that CAD strokes can happen to young healthy people. I would have never went to hospital. I thought I was just sick or something. Docs say that if I wouldnt have gone i would have severe long lasting affects.

[jojogege]

Hello to all and Merry Christmas,

I would like to ask if anyone suffering from CAD has ever been advised or just has decided to take food supplements as antioxidants or/and omega 3. A friend of mind recommended products from a British Company called Aqua Source and I have asked our GP about it but in general here they do not recommend any supplements, but just believe in natural healing which I am sure happens to my husband anyway. Please if you could share your experience in regards to food supplements that may speed the process and strengthen the system I shall be very grateful. Thank you very much!!!