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Interior Carotid Artery Dissection--Who Knows Their Stuff?
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.
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.
hi Bruce, in my experience, yes, my BP was normal pre-CAD and has been high post CAD. 220/130 was the highest. Doctors all think the high BP contributed to the CAD but I know my BP wasn't high previously. I'm on medication for BP and have been told I might have to be on it permanently. My first CAD was in August 2009, (didn't even know I'd had one) second one in March 2010 (resulted in a pseudo-aneurysm and put me in hospital for a week, and off work for 17 weeks) I've since had a redissection of the 2009 CAD. The pseudo-aneurysm has resolved but the CADs refuse to heal. I'm now on an annual MRI. Vascular specialists are 'not relaxed' about my condition.
Hello everyone! I just recently had a 6 month MRA done. Im still not healed all the way:( there is still narrowing in my right carotid. I have blood flow which is great six months ago I had none! I have been taking off the coumadin and put on asprin but having feelings of anxiety considering its not complete healed. Does anyone know how long it takes for coumadin to leave your system? I hope everyone is doing better!
I am not sure if this has ever come up before but if you have had a CAD before you should get a very good doctor if you are considering LASIK. I had a very serious left side CAD back in 2006. It was exercise and exertion related. All is good now and I am off the Plavix.
A month ago I am thinking about Lasik and I go to the best Dr. in the city. I mentioned my CAD and he did one last test after passing all the others. He touched my corneas with a sterile QTIP. The left does not respond as well as the right and I am contraindicated for LASIK. He said that it is not well understood but cornea regeneration happens thorough the nerves which are affected by the CAD.
He even advises that I don't sleep with the overhead fan on to prevent my eyes from drying out. Your eyes are important. I can live without Lasik.
A month ago I am thinking about Lasik and I go to the best Dr. in the city. I mentioned my CAD and he did one last test after passing all the others. He touched my corneas with a sterile QTIP. The left does not respond as well as the right and I am contraindicated for LASIK. He said that it is not well understood but cornea regeneration happens thorough the nerves which are affected by the CAD.
He even advises that I don't sleep with the overhead fan on to prevent my eyes from drying out. Your eyes are important. I can live without Lasik.
sorry I didn't get this message sooner...my doc just told me I should have felt better after a week...referred me to a neuro doc for the headaches. "maybe you have arthritis" You know, I know that when my eyes feel like they shake or I have left ear pain, and that whoosh, I'm not crazy...I had my ICAD on May 6th. I didn't have a stroke. I wasn't given any restrictions...and I am so frustrated I could scream.
It is interesting that you mentioned your ear and eye. Lately he has had a time with his left ear. He always feels like he has fluid in it and it hurts. Sometimes he also hurts in his left cheek area. I guess the blood flow could be his problem too. We are scheduled to see a neuro optomologist on Wednesday. They are just going to give his eyes a good check over. He still sees the shooting star in the left eye from time to time, but neurologist said that could be a blood flow issue. This is just going to be such a long recovery. Speech improving everyday. He is just so tired and I guess that is normal from stroke recovery. I hope all goes well with you!
Hi,
Thats great to hear that your husband is doing well. I am going in for my first follow up scan next Wednesday. Its been just over 2 months since my CAD. Mine is also occluded 100% so I understand the worry about more clots if it opens. My doctor said that the chance of that is very slim. He said once everything stabilizes that its basically healed shut and is safer overall. I also have a lot of issues still because of the loss of blood flow. The symptoms should get better as his body compensates, it takes time. New blood supplies will grow to the areas that need it. My doctor told me that because the blood flow is reversed above my blockage that I have areas that are somewhat stagnant causing problems in my ear and eye. Its getting better for me as time passes. Hes lucky to be off the warfarin so soon, I just had my dose upped to 15 mg a day.
Thats great to hear that your husband is doing well. I am going in for my first follow up scan next Wednesday. Its been just over 2 months since my CAD. Mine is also occluded 100% so I understand the worry about more clots if it opens. My doctor said that the chance of that is very slim. He said once everything stabilizes that its basically healed shut and is safer overall. I also have a lot of issues still because of the loss of blood flow. The symptoms should get better as his body compensates, it takes time. New blood supplies will grow to the areas that need it. My doctor told me that because the blood flow is reversed above my blockage that I have areas that are somewhat stagnant causing problems in my ear and eye. Its getting better for me as time passes. Hes lucky to be off the warfarin so soon, I just had my dose upped to 15 mg a day.
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