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.

[Yecart1982]

thanks, I'm not too sure if they will concentrate on any area of my head since the pain is deep within the ear and neck and they are not bothered about the headaches and scalp pain, one GP laughed when I told him about the pain on my scalp feeling like spiders crawling across my scalp and feeling like someone has pulled patches of my hair out.  Yes I'm well aware it could be something totally different but after searching for months I can't relate my symptoms to anything or anyone apart from the people on here and what they have suffered, of course I haven't suffered any TIA's which many people do when they have had a dissection and I can't imagine what its like for those of you who have suffered one but hopefully I will eventually get a diagnosis on what it is and if anything it could help someone else so I'm hoping in the meantime to post on here(as long as people don't mind) until I have a diagnosis.  I've read all your stories on here and I believe people do suffer from head/neck pain for months afterwards.

[bigangel]

MRI w/ contrast is the best diagnostic tool for dissections. I would verify that the scan you are getting will also show any dissections of the carotid or vertebral arteries, not just in the neck, but in the head where they branch off. Also, could be something completely different since the pain has continued for months.

[Yecart1982]

Can anyone advise? I have received an appointment for an MRI of the Auditory Canal (IAM) with and without contrast and also an MRI of the neck.  Would any of these show a dissection? I am so worried I'll have the scan and it will show nothing. Please see my previous posts about my symptoms.

[TR1968]

I had a CAD in March 2012, full left side blockage but no stroke. I was on coumadine for 3 months, the follow up MR showed complete healing, my neurologist told me to stay on aspirin for another 6 months, he said I may drop it after that if otherwise not indicated. I still take it though, just in case. I do not think there are clear guidelines, or solid scientific data, but at least some physicians think it can be dropped. He said the chance of a recurring CAD is quite small.

I do not know anything about it in the context of delivery though, I would check it with a neurologist / OBGYN doctor.

[Ladydi18]

That is wild,just pulling weeds.Glad you didn't have a stroke.  I had mine from a long dental appt. because my neck was hyper-extended for a few hours. Symptoms didn't start until a few days later though.  I am so careful now what I do.   Will be a long time before I go back to the dentist.  Crazy thing I am a hygienist...worked in the dental field for 25 years and never heard of such a thing.  At least I could clean my own teeth!!!

[lindaw82]

It sounds so wimpy but I was pulling weeds. I was sitting, facing forward and there was a big clump of weeds to my right. Rather than turn my body, I reached way over to pull them and while straining in the pull heard a pop.

I was very lucky and didn't have a stroke.