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.

[tresun]

Happy to have found this community. I am a 69 Yr old married male who suffered a CAD and stroke about 2 months ago now. Fortunately I have no residual deficiencies though I suffered about 4 or 5 intermittent (10-15 minute) periods of numbness and loss of control in my left hand and leg over the 3 day period following the incident. It took me that long to realize what was happening as I had recently had steroid injections in my spine to relieve back pain and thought that was causing the problem at first. I went to my PCP and he sent me to the Emergency room of the local hospital for testing. While in the Emergency room I suffered another of the 10 minute numbness incidents in my left arm and they ordered a CTA. I was routed to the ICU by the resident Neuro-interventionist where I remained for 3 days. He explained that my right carotid artery had a dissection and was completely blocked. He was surprised that I hadn't suffered more severe and long lasting symptoms and indicated that further problems could occur - hence the ICU. I underwent some additional testing, including a CTA of my chest, MRI and sonar of my chest to try to verify the Dissection as opposed to blockage from heart based debris. My blood work was positive with no significant factors out of range. I was put on Plavix and Aspirin-325 in the ICU and remain on it today - Following a temporary interruption of Plavix due to a significant reaction which was later mitigated by some other medication. Anyway, the cause is still a mystery - other than some possible work I was doing to replace a ceiling fan at home. I am on Plavix(75) and Aspirin(325) until the 90 day mark when they will do another CTA to see if there has been any healing. They say I will be on Aspirin the rest of my life and are waiting to see how long the Plavix will be needed. They also put me on Lipitur (40) due to my age though my blood pressure is only on the high side of normal and cholesterol is within limits.    

[Gerriboy]

Hi there, very interested if you have had subsequent mri's over the years and what info they have given you concerning your present condition and future prognisis.
I had bilateral ICAD almost 3 years ago.  Unfortunately  my left and right arteries have not reformed/ remodelled and my most recent mri has confirmed no improvement .  I continue to have headaches, diziness, fatigue, memory difficulty etc but am dealing with it. My consultant is reluctant to operate due to the location of the dissections ( in the c2 area )
This is why i'm anxious to communicate with someone who has had CAD for a long period and exchange stories, info, etc.

[AOSDC]

Request an MRA with contrast. Sounds like an CAD. The doctors saved my life with an MRA with contrast. Nothing was seen on a CAT SCAN.

[bizzybruce]

Has anyone been diagnosed with Horner Syndrome?  My MRI showed no carotid dissection but I have been diagnosed with H. Syndrome, following intense side of neck pain, headache, and pulsating tinnitus, which lasted for almost two months.  My remaining symptoms are a droopy eyelid (ptosis) and no sweating on right side of forehead.  Thanks, everyone, for sharing.

[Eg85]

Yes. I had horners syndrome as a symptom of my carotid dissection. Horners syndrome is a symptom of an underlying issue, not a disease itself.

[jennyd5]

thanks for information.  I am headed to U of M vascular clinic and will let you know what I find out!

[jennyd5]

Thank you! I am headed to U of M vascular clinic this month!