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.

[Ladydi18]

I think the biggest problem I have is living with the anxiety of all this that it could happen again.  I worry about it every day!!! My neurologiest tells me it won't happen again, I feel I live in fear everyday that it will. Not sure I believe it.  I am sure in time it will get better (it has been 10 months) How do all of you live with it?

[Ladydi18]

Thanks, that makes me feel better.  I had an MRA 2 weeks ago and I am finally healed.  I am at 10 months but my neck still bothers me a lot.  My neurologist also told me that my neck cannot hurt from the CAD.  I too disagree as you feel.  The neck pain is really the only problem left.  

[BrucePM]

Sure sound like CAD symptoms - particularly headache on one side (which would be the side the CAD is on) & sore scalp (called a palsy, caused by damage to the nerve which runs along the artery). Reading through, I'm sure you've noticed how many of us were misdiagnosed or sent home with no diagnosis - I was too, from a metropolitan teaching hospital, even though I had Horner's as well (drooping eyelid, constricted pupil on CAD side). (Have you studied your eyes for this? If it's there, pointing it out to your doctors might help.) In my case and many others, it's only the imaging which leads to diagnosis - and even there, my first CAT scan (no dye) wasn't enough.

You might consider putting yourself on baby aspirin (81mg, once a day) until such time as someone figures out what the problem is. It's roughly as effective as Coumadin if you do have a CAD.

[Yecart1982]

Hi sorry Ladydi18 I've just only noticed your reply.  I have suffered these symptoms now for nearly 21 weeks, it started on 24th Oct 2012 and its now 19th March 2013.  I have an ENT appointment next week that I waited 5 weeks for the referral and 11 weeks for the appointment , GP referred me on the 8th Jan and I got the appontment by post on 14th Feb for the 25th March.  I have had 5 GP appointments ( three different doctors), one GP phone consultation and one visit to A&E, at my last GP appointment on 30th Jan I was told to make a phone colsultation appointment if I was needing to go back for the same issues, other than that I was to wait for my hospital appointment and take anti-depressants.  No one is listening to me and I'm exhausted.  I've gone between thinking its possibly been a dissection to thinking its a sinus infection ( although I have no symptoms of a sinus infection) and now because its been so long and I'm still suffering I actually told my husband that I thought that I had something blocking or growing in my head and causing the pain and pressure within my ear and head.  The burning pain at the back/side of my head really alarms me as I've had it for so long. At the moment the whooshing/heartbeat noise has changed to a whirring noise, that changed a good few weeks ago, I woke up one morning and realised the whooshing was a different noise.  I still have the sore ear and pressure, also an ache below my ear lobe on the neck, pain above the ear on the temporal bone more so when pressed or touched, burning sensation/sore to touch on the scalp slightly towards the back of the temporal bone, pressure headaches that can be on top or at the side sometimes covering the left eye/brow bone and ocassionaly a pressure sensation on my cheek bone.  I just find it hard to describe the pain and sensations I'm feeling and I'm frustrated at my GP's not taking me seriously.  I'll update after my ENT appointment next week.

[lindaw82]

I tried working out again after about 8 months and it made my headaches worse but at 12 months it's not affecting them. However, I went to the gym on Sunday, got a pretty a good workout. About an hour later I went to the grocery store and checked my blood pressure, it was really high 149/95. I've never had high blood pressure, it's always been normal so the high reading really scared. I have a doctor's appointment this afternoon.

Just wondering if you've checked your blood pressure after working out? I didn't know if there might be a correlation between working out post ICAD and a rise in blood pressure which could also cause headaches.  

[lindaw82]

I'm so glad to hear you're doing so well! I too am working out again but not with heavy weights, the doctors hasn't released me back to 100% whatever I wanted to do. I'm at a 25 lb weight limit. But it does feel good to be back at the gym.