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.

[lindaw82]

Hi! My CAD was a year ago last month, doing so much better! I had still pretty bad neck pain at 9 months but at 12 months didn't have any, somewhere in those three months it finally went away. I had asked my Neurologist about it and she didn't think it was related, she said maybe I'm holding my neck stiff because I'm scared of moving it. I knew that wasn't it. That's why I like about this site, you find others who have experienced the same symptoms as you that doctors don't think are related. Reading that others experience them reaffirms to me that they are related.

[rnkelgirl]

Ok I am so happy to have found this page. I also had a right carotid artery dissection on 01/10/13. It started out three days prior with a headache, jaw pain and neck pain. I honestly thought I had a cold. The headache continued to get worse and on the third day I woke up with a droopy right eyelid, bloodshot eye, and constricted pupil. I am a nurse (Ob/Gyn), and so I knew something wasn't right. I went to the ED and I was lucky, they diagnosed me right away with Horner's syndrome and after a carotid angiogram they diagnosed me with a carotid artery dissection and admitted me for intravenous heparin therapy. I was only hospitalized overnight and they sent me home with Lovenox injections and Coumadin. I too felt like there weren't a lot of instructions for do's and don'ts except for foods to avoid while on coumdin, It's also very stressful not to know what symptoms to worry about and which ones to not worry about. It's so nice to see on here that my scalp pain and my intermittent neck pressure are common problems. I joined the Facebook Page today...better late than never!!

[JayeMo05]

Hi...I just stumbled upon this forum...wishing I had done so years ago.  Misery loves company! Ha. Not sure where to start... My ICAD happened over 7 years ago.  I went to bed with a severe headache along with a whooshing sound in my left ear.  The next day my whole head was throbbing.  Before the dissection, I was a healthy, active, 45 yo who ran 4 to 5 times a week - which is what probably saved me.  I also never took anything stronger than a couple Tylenol now and then.  (I was later told the whooshing sound was a result of my coratid dissecting.)  Long story short - although I'm thankful I didn't suffer a stroke - I continue to this day to suffer a nonstop, 24x7, headache above my left eye and a small spot on the back of my head.   I'm told I will most likely have this headache for life.  I take 5 different meds - over 30 pills/day just to function.   It took a few years of therapy (I still go monthly) to help me adjust to my new "life".  I am soooo thankful for a strong support system (family & friends).  My family is the reason I finally got some (emotional) help as I'm positive I would have thrown in the towel by now.  I still have days where I feel I might lose my mind...instead I pull the blinds and curl up under a blanket.  My pity-party moments have become fewer and farther between.  I've stopped wishing for a day when my head is pain free...I'm definitely in a much better place now.  Please keep me posted on your status and thanks for allowing me to vent.

[Ladydi18]

How long have you been having these symptoms?  I take it you have had MRA's to confirm??? If you have and it has been confirmed, I would go for another opinion until you find a doctor who will help you.  When I was in the hospital with my stroke, they didn't even know I had a dissection, it wasn't until I went for a second opinion 5 WEEKS later that I actually got a diagnosis. I have a wonderful doctor now, that actually calls me up to see how I am doing through out my 8 months. Hang in there...it does get better.

[nolester]

I am several years post ICAD and still have signs of Horner's syndrome. My ophthalmologist has recommended that I get surgery on a muscle in my affected eyelid, and I have researched it and see that it can be an improvement and it doesn't look too complicated. However, he strongly recommended his partner to do the work, and it felt like he was selling me on it.
I see that my ophthalmologist's website advertises eyelid surgery, but that it is all for cosmetic reasons NOT related to Horner's. The latter surgery is on only one very ICAD specific muscle, and the usual eyelid lifting surgery is on more than that, and the best approach is different.

Has anyone on here had eyelid surgery for Horner's? How did it go? Did it work? Where did you have it done? (I am in North Florida.)

[Yecart1982]

Hello everyone, I'm still suffering symptoms of an ICAD. I have been treated for non existent ear infections and a possible Spenoid Sinus infection. I am still suffering pressure behind the ear, a constant ache within the ear, whooshing sound, constant dull ringing in the ear(almost like an electrical noise as if you have left a tv on standby), constant ache on my neck below the ear lobe.  As soon as I exert myself the headache starts, it can be on top at the back or a burning/pins and needles like pain above my ear on temporal bone, even feels sore at times to touch the scalp. All of these symptoms are on my left side.  I have now been referred to ENT dept at my local hospital and I've been told it could take another two months. I have visited my GP surgery in total 5 times and A&E once, where I was treated as if I was an idiot and told it was a GP matter as I had already received ongoing treatment from a GP then I was to go back, no one seems to be listening to me.  I've explained over and over that I painted my ceiling and then I experienced pressure/earache within the ear with a whooshing noise and headaches but still two GP's believe that is just a coincidence. The third GP who referred me for a hospital appointment has said I am at a loss to what it could be but it's not an ear infection nor a sinus one as the antibiotics would of cleared it up.  I'll continue to post here if you don't mind until I get a diagnosis and maybe it will help someone.  Part of me thinks it isn't a CAD but then part of me tells me it's going to be something like that.  I wonder if anyone has had symptoms as long as I have before being diagnosed.