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.

[woodsd79]

Im feeling ok for the most part. My neck willl get really tense during the day and feels swollen. The shooting pains come and go. Like you said everything on my left side is very hypersensitive. Went out of town last weekend and the elevation change was incredibly painful in my ear, it about made me sick. My left carotid is completely blocked and will likely stay that way so i hope it doesnt mean long term headaches. My mother works with a woman whos friend had the same thing happen that I did except she had a much more serious stroke than me. She passed out while working out and had here carotid totally blocked. Its been a year and a half and she is totally recovered and does everything she ever did before so I am optimistic. I have a hunting trip this fall I am hoping I can still go on. I go see the doc in two weeks. I'll keep you posted.

[lindaw82]

It does help, thanks. Lets me know that it's normal and I don't need to run to the doctor! For me it's like all my senses on the left side of my face are hyper sensitive. Light, smell, and hearing. It has gotten a lot better though. I guess I just would have thought after 4 months it would be gone or after the CAD had healed. Guess not! Those crazy nerves. Although I can't complain too much about the nerves because that's what triggered the horners which told the doctors that something was wrong.

How are you feeling and when do you go back to the doctor?

[woodsd79]

Hello,
I know you are a ways farther in to you your CAD than I am but my headaches are very similar. Im about 5 weeks since mine happened and already they are sooo much better. The constant headache is gone but the stabbing pains like you describe get pretty bad. Sometimes they are triggered by sunlight or when I get to moving around a lot and getting my heart up I can feel pressure build in my neck and then the pains. Sometimes they seem to be for no reason, I'll be driving and they will suddenly hit me. I've had to pull over a couple of times. They usually start at my temple and shoot behind my eye or across my forehead. My Dr told me that even though the damage is on the inside of the artery scar tissue still builds on the outside of it. He said that there are a lot of nerves that run near your carotid and between the scarring and the inflamation there is just a lot of irritation. I hope this helps.

[lindaw82]

Hi! I'm glad you found the site, there's a lot of good information on here. Sounds like you are making a good recovery. Keep up us updated on your progress!

[Mtgoldeneagle]

I'm a 46 yr old fit, active female who was running 3 times a week and cycling. Prior to my CAD I did the P90X2 upper body workout. I think it was either the pull- ups or some of the weird weight moves on stability balls. Anyway, my symptoms didn't start till two days later. I was out walking my dog and suddenly my right eye felt like it was going to pop out of my head. It hurt really bad, but I figured it was sinuses. That night I had a rushing sound in my left ear opposite of the side where I had my CAD. I woke up to find my eye swollen and assumed it was sinuses. My neck and shoulders had been aching ever since my workout, but now the pain was incredible. My head hurt so bad I told the nurse on the phone my brain felt like it was going to explode. The VA prescribed me antibiotics. By Friday (5 days later) I decided to go to my Opthalmogist and he freaked out saying he thought it was Horners Syndrome. He didn't have the drops to test and I thought it was sinuses so we waited over the weekend. On Monday I saw a doc who ordered up blood tests but no MRI. I saw my eye doc again and he said I had Horners and needed an MRI. Tuesday I had one and was told Bout my CAD. Thursday I saw a neurologist who said my right front CAD was inoperable because it was at the brain stem. He said I was lucky because my blood rerouted maintaining thenWillis Circle and blood to my brain. I have no symptoms except my eye. It's been 2 mos and I feel pretty good. I have another MRI in a month. I've had passing symptoms mentioned here. For about two weeks I could hear blood pumping in my right ear constantly. It went away. I've also had sudden sharp pains in the veins in my neck and occasionally in my right ear, but they too have passed. It was wonderful finding all of you tonight. This has been a very scary ride.

[lindaw82]

Hi all! I hope everyone is doing well! I wanted to ask about the headaches to see if anyone has experienced the same thing and if so when they'll finally go away. I'm 4 months into the CAD and the artery tear has healed but I still have the headaches. The doctors said the headaches are from the nerves being irritated and inflammed and I was hoping somebody could tell me how long their headaches lasted. Mine are much better, I've gone from 7 Gabapentins a day to 4 so that's good but everytime I try to cut down another daily pill I feel the stabbing starting behind my eye and above it. Also, if someone wears a bunch of perfume to work, it sets off a pretty good headache and I usually have to go home to work the rest of the day. I have different pain pills I take when the headaches get bad which they still do. And, it's always the same kind of headache, the stabbing, shooting pains around my eye. Computers, reading, anything that strains my eye I know can cause them. There are other days I get the bad headache and don't know what triggered it.

The headaches may also be from the Horners syndrome. My eyelid doesn't droop any more but the pupil in that eye still constricts some. Not as bad and noticeable as in the beginning but still smaller than my other pupil.

Just wondering when the headaches might be gone. The doctors don't know but I thought someone who has been through it would have an idea.

Thanks!