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.

[DebBBrown]

I would go to Mayo and see Dr Hayes or at least have a local dr order a CTA. You may have Fibermuscular Dysplasia. I had SCAD and it has been determined that I and many other SCAD survivors have FMD which is a connective tissue disorder.

[DebBBrown]

I have read about the whooshing sound on the FMDSA site. I think it relates to the carotids. I believe for them to really see what is going on you need contrast. CTA or MRA. I had a CTA to diagnose me with FMD.

[jennyd5]

I was diagnosed with a coratid artery dissection on my left side after a headache I could not get rid of.  They put me on 325 aspirin and 5mg of coumadin for three months.  I am an active, healthy 45 year old female.  I continued to exercise but no lifting of weights or running.  Stuck with walking at stationary bike.  At my 3 months follow up CAT SCAN with dye it was found that my artery has now completely closed.  I am very uncomfortable with this.  They have checked blood flow to my brain and it is good with 3 arteries.  Has anyone ran into this???

[angels888]

Hello fellow CAD sufferers!  I am glad to have found this support group. I had a slip and fall last Nov. 2014, and hit my head on the ground/gravel.  Had CT Scan, but negative for fractures.  Diagnosis were concussion, neck sprain and hematoma.  After few weeks, my headaches and neck pain was so severe and was radiating to my shoulders and arms causing numbness and tingling, and was referred to neurologist.  Neurologist said I had post concussion syndrome.  He requested for MRA for both brain and neck, results came back as possible carotid artery dissection by the radiologist but neuro said carotid stenosis.  Neurologist then suggest to get another MRA in six months, but I went back and saw him after a week due to chronic headaches and neck pain.  He then prescribed neurotin and baby aspirin,and requested for another MRA Intracranial.  I had VNG testing for my dizziness and results came back as labyrinthine concussion and needed vestibular therapy.  But neurologist hold off on the vestibular therapy due to risk of neck movements, saying my condition as suspected carotid artery dissection, he then change my dosage to aspirin 325 mg to prevent blood clot.  I was referred to neurosurgeon, and he said to wait for another 6 months to have another MRA, he stated dissection should heal by itself.  For the meantime, here I am wondering when this carotid artery will popped, I feel like the medications are masking my pain.  Just wondering do I really have to wait 6 months to wait and see if it heals?  Even if I have physical and massage therapy, my headaches and neck pain don't go away, I believe my headaches and neck pain is not post concussion syndrome anymore but CAD.  I used to be active and energetic, after the injury, the pain was draining my energy, it was very depressing, frustrating and disappointing. Who specializes in CAD? Is it neurosurgeon or vascular surgeon.  I was thinking of getting a second opinion, but just wondering if it's norm to wait for 6 months?

[Cyndrn]

I just wanted to make you aware of MRI/MRA contrast dye. It is not dye. It is a toxic heavy metal called Gadolinium. I have a fatal disease called Systemic Fibrosis (NSF), from the metal injections looking for CAD.  I would avoid MRI contrast. CT is safer.

[tinabina22]

Thank you Craig,
I too have been diagnosed with the same thing, woke up one morning with a killer headache that wouldn't go away but I had my grandson and didn't want to scare him so I didn't go to the ED.  He went home the following day and the headache had let up a little bit but was still pulsating.  I was taking excedrin sinus in hopes that the caffeine would keep it under control, it took the edge off but that was it.  After calling in sick for 2 days, and the headaches gradually getting worse, I finally drove myself to the hospital ED, being I worked there they put me in a bed and started the test.  I had blood test, urine test, spinal tap, CT scan and a MRI.  I think it was the CT scan showed the main artery on the left side of my neck was closed off and the smaller one was about closed off, they rushed me to a nearby hospital that had a better CT scanning machine in which that one showed my artery was actually dissected.  They were determined that I had been in an accident but nothing had happened! So they told me I had a spontaneous interior carotid artery dissection on the left side of my neck.  They put me on warfarin and are in hopes it will heal itself, the headaches are still pulsating, some days worse than others, I have been out of work for a month now but am going stir crazy.  I think my Dr. is going to let me go back for half days to see how that works out.  One of my co-workers told me the other day that she would be going nuts sitting at home with "just" a headache! I wish this was "just" a headache, it would be so much easier to deal with.  Your story made me feel much better and like I wasn't being paranoid, whining or that maybe it was "just" a headache.
Thank you
Tina

[Yecart1982]

UPDATE Hi Everyone I first posted here back in November 2012 because I had googled my symptoms which led me to this page.  I'm in Scotland and GP's have been useless.  I started doing my own investigations because I was told I did not have pulsatile tinnitus and that I had normal tinnitus and a headache.  No one took me serious and every doctor tried to separate my symptoms. I found a private neurologist and asked to pay for an Mra/Mrv, it was read as normal. I was still convinced something was wrong because I'm still suffering from the exact same symptoms. Two weeks ago I sent my scan to a doctor I found in New York.  He called last night to say I have a vertebral artery dissection. It happened in October 2012 while painting my ceiling.