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.

[ironchair91]

Has all healing occurred?  Did you use any supplements?

[tarapatiki]

Good luck to you!!!  I had my rt interior carotid artery dissection 6 months ago.  No attributable cause.  Headache for a week before sudden left sided paralysis. .  Very active lifestyle, wt training 2-3X week, etc. Have always had low blood pressure, no other physical problems.  I still have some weird raw/sore or stabbing sensations in my head, neck,  temple, particularly when lifting groceries or exercising too much.

There's just not that much information available because CAD is a rare event. Frustrating!!  My personal, subjective opinion is that these "spontaneous" dissections must be due to some pre-existing anomaly in the artery, a weakness in the artery that is not one of the syndromes (FMD, Horners, Marfans) that is discussed in the medical literature. Many people who get these spontaneous dissections are youngish, healthy, very physically active people.  Also, primary care doctors often have never seen this condition, ordinary people have never heard of it. It's hard to get definitive answers.  If you have had four CADs, I'd say definitely there is an underlying condition causing this, it's not a random event.  But getting a test to determine a cause is going to be hard. I'd search for answers, consult the best experts in the field. But finding them is hard!!  And sometimes they disagree.  There is an aneurysm center at Hopkins where a friend of mine who had an aneurysm (not CAD) was treated successfully.  Some place like that - multidisciplinary - like the Cleveland Clinic or Mayo Clinic might be able to help.

The only exercise I do now is walking on the treadmill.  I lift groceries, etc. but am careful.  I drive but still am careful about turning my head.  If the symptoms (twinges, stabbing pains) go away completely at some point, I'll increase activity.  After a year I'll be off Plavix.

Again, good luck!!

[ironchair91]

Did you ever find out about supplements? Husband had carotid dissection - on warfarin and bp meds.  Would like to use natural.  What is your experience?

[pwoliver]

I'm glad to have found this forum.  In November, I started having terrible headaches.  The kind that would wake me in the middle of the night with throbbing pain and nausea.  Several visits to the doctor resulted in misdiagnosis of sinus or migraine issues.  After having temporary loss of vision in one eye and 3 MRIs, they determined dissections.  

I was admitted to the hospital in December (it took several weeks to determine the cause of headaches) where I had an angiogram. Shockingly, I had 4 dissections! Both carotid and vertebral arteries leading to the brain were dissected.  Miraculously, I didn't suffer a stroke.  I don't have a trauma or event that can be linked to the dissection.  I was extremely fit, running most days and doing cross fit exercise.  

I've been on Plavix, aspirin, and blood pressure medicine to allow healing.  At the 3 month mark, I had another CTA. Dr feels I am about 90% healed but continued me on meds and exercise restrictions.  I am only allowed walking....no running, weights, lifting, etc.  At the 5-6 month mark, I will have another CTA and hope to come off the medicine.  I still have the weird twinges in the head, neck and ears.  The awful whooshing sound finally stopped at about 3 months out.  

I know it is very rare to have 4 dissections.  What tests should I ask for to determine an underlying issue? Has anyone heard of Cross fit causing dissections?  I've seen a few specialists but everyone is hesitant to do anything til I'm fully healed.  I don't seem to have any indicators for Marfans, etc. although FMD might be a possibility.  I'm thankful to God to be here and glad to be feeling mostly normal.  Thanks for any insight others can offer on underlying causes.

[danielle6849]

Tell them to check for MYH11. That's what caused my dissections. I have one that has not healed in several years, and one that did heal. My TIA was almost ten years ago. I am back to my workouts as a routine, but no longer kick box. I have been doing yoga again, which I love, though modifying the poses. Even with the modifications, yoga makes me nervous. I came on this thread to see if there is anyone else who is exercising with carotid dissections, and whether they are avoiding yoga.

[danielle6849]

Tell them to check for MYH11. That's what caused my dissections. I have one that has not healed in several years, and one that did heal. My TIA was almost ten years ago. I am back to my workouts as a routine, but no longer kick box. I have been doing yoga again, which I love, though modifying the poses. Even with the modifications, yoga makes me nervous. I came on this thread to see if there is anyone else who is exercising with carotid dissections, and whether they are avoiding yoga.

[MEP2]

How are you feeling?  Have you had an MRA of your neck and brain?  These tests are different from M r I in that they focus on the blood vessels.

[tarapatiki]

You definitely need more medical testing.  An MRI by itself might show nothing.  What about a doppler to detect an obstruction in your carotid due to a clot forming after a tear?.  Headaches should not go on like that.  Your physical state has changed.  I felt strange/fuzzy for about a month before my symptoms got worse....headaches for a week and then a clot broke away from the occlusion and caused temporary paralysis in my left side.  Rt interior carotid was occluded 95 percent.  Don't let this continue without further testing and a dx.