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.

[steffynie]

Hello.  I've been reading everyone's posts and curious if anyone's doctors have told them stats on having a subsequent dissection if the first wasn't due to any sort of underlying disorder.  I had mine in May 2012, which led to a stroke (luckily very minor, though it was not a TIA).  I didn't go to the doctor for about a week (June 2012) and ended up in ER where they realized what was going on. Was in ICU for 4 days, then 4 more on telemetry unit. I was 38 at the time and healthy and no one seemed to know what to do with me.  I was only on Coumadin for about a month, then switched to aspirin and was given green light to get pregnant.  I am due to give birth in about 2 weeks and want to stop my aspirin until after the baby is born but my neuro refuses to tell me it's ok to stop.  I had a CT done in the fall and was completely healed.  I can't get an epidural if on aspirin therapy and need to know what to do, but no one will tell me.  I plan to try unmedicated birth but absolutely want to keep my option open for an epidural.  This is my 3rd child but first after the CAD.

I am so worried about delivering on aspirin and also afraid of what will happen if i go off of it.  I can't find any information that helps me.  Getting close to the due date and panicking.   Has anyone had children after an iCAD, and if so, were you able to deliver ok?  Anyone go off aspirin for any length of time or been told by their doctor it is ok?

[Yecart1982]

Hi unfortunately I have no access to those types of doctors although after my recent Ear Nose & Throat appointment at hospital the other day I will be going back to my GP and asking to be referred to a Neurologist.  The hospital appointment was dismal, walking out the appointment room after my appointment I felt as if someone had kicked me in the stomach.  The doctor was nice enough and jotted down some of my symptoms, she checked both my ears, my throat, my nose, my jaw and my neck and glands.  I was then sent for a hearing test and a ear pressure test. I then seen the doctor again who told me "you have a muscular problem, you must have a sore muscle on your neck, your ear is fine and you have nothing serious wrong with you".  I questioned the fact that I have no muscle pain in my neck and can move my neck freely with no stiffness or pain( I do have a constant ache within my neck deep within my ear but its not muscular, I know what muscle pain is), I asked if the supposed muscular problem in my neck would cause  pressure and pain within my ear, tinnitus, pulsatile tinnitus, headache and burning head/scalp pain and the doctor said there is nothing wrong with your ear.  I said ok so what is wrong with me, I do not have a muscle pain in my neck and do not agree with you.  The doctor then asked me what I would like to happen, I said sternly I want you or someone else to get to the bottom of what is wrong with me I have suffered for 6 months and I'm no use to anyone. The doctors reply " you have nothing wrong with you that is serious but if your looking for a scan of some sort would you like us to do that?" Again I said I was there to find out what was wrong with me and if a scan was an option then I'd take it. The doctor then said "all the scan will do is put your mind at rest as the scan will rule out anything serious because you do enough for you not to have anything serious".  I was sent on my way and told I would receive an appointment for a MRI scan through the post.  So now off I trot back to my GP.

[Ladydi18]

What did you do to cause the CAD and the pop?  Did you have a stroke too?

[lindaw82]

How frustrating it must be not to know what's wrong. I went to my GP, he sent me to an opthomologist (because of the horners) and both doctor's agreed I needed to see a neurologist so they referred me to one. I don't know how your healthcare system works but do you have to be referred to a doctor like a neurologist, neuro surgeon, or vascular surgeon? On this site I've read where people have posted they were treated by these specialist. If you do have to have a referral, can you insist to your GP that he refer he? I hope you're able to get the kind of help you need soon.

[lindaw82]

I'm right there with you! I don't live my life in fear but it's always in the back of my head. I find I'm still cautious when carrying things, lifting weights and other physical activities. I actually heard a pop when my artery dissected although I didn't know what it was at the time, thought I pulled a muscle in my neck. Sometimes while I'm doing something physcial, I think, okay no pop, that's good. Hopefully a lot of this will pass with more time. Take care!

[Yecart1982]

Hi there thanks for your reply.  The only thing I have different with my eye is that the pupil is larger, I noticed this when the headaches started. So the side where everything is sore with my ear and head is the pupil that is dialated maybe a 3-4mm than the other.  I mentiond this to the 3rd GP and he said it can be normal to have a dialated pupil with a headache.  I will update after my ENT app.