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.

[81743]

my question is being my right side carotid artery is occulted and already had sugery on the side is it possible that you can have surgery twice on the same side please help here thank you

[AnneBV]

I'm am very happy I found this site. Sept 16 2014 I fell and twisted my body. The following week on Monday and Tuesday I had facial pain that my Dr. thought to be trigeminal pain. Wednesday, after work, I was struck with worst headache ever as I unlocked my car. In less than a minute, the painful throbbing heartbeat sensation just below my shoulders shot up the back of my neck and across the top of my head causing a temporary blackout. Coming to a few minutes later, I knew I needed help. Fortunately an ER was across the freeway from where I work. When I arrived, my BP was 219/119. After an xray and three hours of treatment they sent me home with a diagnoses of sudden-onset occipital headache. The next night the same occurred again with a slightly lower BP. This time I was diagnosed as having a migraine attack even though I told that I knew this was not one. I have had those all my life. That weekend I visited my daughter and son-in-law (a neurologist whose specialty is in strokes). He got to see a full blown attack. Arrived home Monday night. Went to work the next day but felt awful. Again Tuesday night back to the ER. This time my husband let my son-in law know that I was in trouble again. He spoke with the attending ER doctor and insisted that a CAT scan with contrast and a lumbar puncture be done. The ER Dr. saw nothing and once again sent me home with a "migraine" telling me not to work the rest of the week. The next morning as soon as a Dr. whose specialty was reading CAT scans came on duty he looked at my scans. At 8:16 that morning the attending from the night before called saying that something was found and that he was calling my regular Dr.By 8:30 he had called back saying that they were going to call to have me come in that day. I walked out of her office with a diagnosis of a carotid artery dissection and a handful of prescriptions. The next day I saw a neurologist and walked out with more prescriptions. I now take 6 meds to control BP. I experience a few stroke like symptoms but they are not consistent (trouble with right leg sometimes, visual issues, and when my head hurts there are issues with communication). It scares me to think where I might be if my son-in-law had not insisted on that CAT scan. So far, I have had 4 ER visits and should have gone 2 other times. I am so grateful to him and the doctors who are helping me to get through this.
These posts have been a true encouragement. It has also opened my eyes to the fact that I need to take this more seriously but that there is an end to the injury.

[CircleOWillis]

I was wondering this also, about the BCP.  I have been on them due to extremely heavy periods and have hated being on them. (I am off them as of my Dx, and may very well menstruate to anemia as I did before...) My ICAD/O was really out of the blue.  I can say I had been taking ibuprofen for two weeks prior due to some neck/shoulder pain on the opposite side.  I don't normally take stuff, am very healthy, etc.

[tarapatiki]

I wanted to report and give hope to all who have experienced carotid artery dissections.  I am almost 11 months post rt interior carotid artery dissection.  Finally, I am symptom free. I had intermittent stabbing pins on the right side of my heard, face and neck until a few weeks ago.  My doctor was clueless about why I had them.  Finally, I feel like my old self.  Hope this gives hope to everyone who went through this awful experience..

[Junee2]

I experienced a spontaneous left carotid artery after I had receieved unwanted pressure on my neck.That was back in 2000. After a severe headache and disorientaion for 3 days I finally went to my GP who noticed that one of my pupils was a lot more dilated than the other, She had me in hospital very quickly where the main specialist decided that I had a migraine, and with 12 students arlound my bed, explained how he knew that. They wanted to do an mri before I went home, but they put me at the end of the queue until I said I was leaving because I could manage a migraine at home. The MRI happened and a severe CAD discovered which immediately changed my medical position in the queue. I take clopidogerel, and bp tabs, and leads a fairly normal life, though often with pain. Now at 14 years on, the pain has increased a lot, I know hey cannot operate, so I deal with it as I can Every evening I take 1 or 2 mersyndol which enables me to sleep through pain, and am doing okay, but I feel I could be coming closer to my use by date going by pains I experience.

[POWPOWJP]

Have you seen a neuroradiologist? I have a dissection too and they told me to wait 6 months and I would probably  feel better. I went to a neuroradiologist and he did an MRA and told me it was bad but could not tell me how bad until I came back for and angiogram. Going in 2 weeks. I too was misdiagnosed for 6 months and have recurring headaches tired eye problems.

[pwoliver]

I've seen several people mention wearing a blood pressure monitor while exercising.  What kind do you wear?  Is it a watch (like heart rate monitor) or wrist cuff.  Thanks.