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.

[KzooMTBer]

This forum is unbelievable!  I can't believe that I stumbled upon this accidentally when looking to see how long it takes to have a CAD heal.  Seems like there are a variety of times.  I tore my artery mountain biking in October.  I had an MRI a month and a half after the injury in December and they did find that it is starting to heal.  They have given me clearance to run and to not lift anything over 30lbs.  Is this the correct information?  When it first happened I was not sure what was going on.  I thought it was a reaction to medication I was taking.  I ended up going on a trip to Dubai for a week for work and couldn't figure out why I was so light headed and forgetful of words.  I came back and told my wife to take me to the ER.  They gave me an MRI and CT Scan and the results came back that I had a CAD, a pseudo aneurism which caused a small stroke in my frontal lobe brain.  I was suffering tremendous headaches at the beginning.  They prescribed Vicodin and then switched to Flexeral which seemed to do the trick.  After two months the headaches have for the most part subsided.  I still get light headed from time to time when I over do things.  I have just learned to deal with that.  Also if I am too active my face will suffer from tingling in my face as well as pain in my neck on the side of the CAD.  I have been nervous to do anything active until this week.  I went jogging for two miles on Monday, rode a stationary bike on Tuesday for 20 mins, and did the elliptical for a half an hour yesterday.  I accompanied this by lifting 20 lb arm curls afterwords.  I was completely worn out afterwards and still suffering from the numbing sensation in my face and pain in my neck.  Is this something I should be worried about or should I just take it easy and not try to do so much?  I am worried that the Neurosurgeon does not know enough about my diagnosis.  Any thoughts out there? Thank you very much to whomever started this forum.  It has given me a tremendous amount of information about what happened.  More than the doctors so far!!!!

[MEP2]

I am new to this forum and grateful to have found this.  I am a female in my early 40s and recently learned I had a ICAD at C2 with a subsequent small aneurysm.  This after almost a year of an "inner ear infection" and a six week period of LE weakness on the opposite side of the dissection which was diagnosed as a running injury and physical therapy was sought for strength training.  I am on aspirin only.  My biggest complaint is a burning sensation on same side of head and neck as dissection.  I had dizziness and an imbalance that I just learned to live with.  That seems to be getting better.  My ear pain is improving and the pulsation in my ear is decreased.    I was restricted to indoor running but am able to workout (no yoga, no chiropractor, no ceiling painting, and still scared to lift weights).  

I realize how fortunate I am.  This experience taught me that we need to listen to our bodies.  My ENT doctor did everything right including ordering an MRI...the diagnosis simply got missed by the radiologist until further testing was done.

thanks to all of you that contribute to this blog.

[tarapatiki]

I lifted weights (with a trainer) for several months before my dissection. In fact, the day before I had a mild transient stroke due to my rt carotid dissection,( even though I was feeling lousy and had a severe headache), I went to the gym (and also to the hairdresser).  However, I'm not sure this was the cause of my dissection.  It could have been a lot of other activities.  I never had the pain in my neck that signals a dissection.  Just headache and felt lousy/lethargic/out of it. Self-medicated with Excedrin which possibly prevented me from having a major stroke (all the aspirin in Excedrin).

They put me on Plavix in the hospital and even though my doc said my dissection has resolved he said I should continue on Plavix for a year since that was the "Standard of Care".  I'm taking a baby aspirin, too. Cvering all bases.  He said fine.    Don't know what factors enter into the decision to use coumadin or Plavix with each pt.  

Good luck finding a center for CAD.  There should be some good ones out there. Cleveland Clinic or Mayo?  I'm fairly satisfied with local treatment but if my CAD hadn't resolved, I'd search for second, or third opinions.

[tarapatiki]

Oh, that is such good news. Such a relief. Congratulations!!!!! And guess what?  I just went yesterday to my vascular surgeon.  First, they did a doppler on both carotids.  I couldn't  hear the whoosh sound as loudly on the right as I could on the left.  And the tech was very supportive and sympathetic, wishing me good luck.  I thought, damn. Then I saw the doc who said my dissection appeared to be resolved.  I couldn't believe my ears.  He said no restrictions on activities except chiropractic or anything that would extend or snap my neck back. He said these dissections are  "random" and he had a curious lack of curiosity about the cause of my dissection (my daughter, a doc, says if you want curiosity about rare conditions, you go to an academic medical center). He told me (again) the story about the wife of a doctor in the next building to his (herself a doctor) who was helping the UPS man push his truck out of the snow and suffered a dissection from it.  But he said the good thing about dissections is that they will clear up by themselves, unlike plaque-clogged arteries that never clear up on their own and require surgery (endarterectomy)

I came home from the doctor's office and took a seven hour nap.  Relief, I guess.

Good luck with your CPAP.  It sounds like it severe sleep apnea might be the cause of your tiredness.  I had a sleep study in the middle of all this and they said only mild apnea.  

Very happy for you!!!  Report back on your tiredness and if the sleep study helps.  Thank you for your support. This is a very stressful condition. It feels like someone has a gun to your head and you never know when they are going to pull the trigger.

[carolW54]

I just got the results of my latest doppler of my neck.  I had dissected Sept 18 so it is almost three months now. My dissection is resolving!.  I am so happy about that but still very tired.  My neurologist suggested a sleep study which showed I have severe sleep apnea.  No wonder I am always so tired.  I will probably need to use a CPAP at night.   I do not have headaches anymore and other than the fatigue feel quite well.  I still have absolutely no idea about how I dissected but I will just stay in the happy knowledge that I am healing.  Hope you get the same results.

[tarapatiki]

Thanks so much for the words of encouragement.  I go to the vascular surgeon for a follow up and doppler on Tuesday  - it will almost be three months.  Hopeful they will see some changes.  My PCP says it takes 3-6 months to recover.  I'm still trying to figure out how this happened out of the blue to me.  I didn't have a sharp pain, just a gradual onset of symptoms, a worsening headache for a week or so. Here are some possible causes and I'm throwing them out so that others - physicians and pts - can possibly use the information. In the month or so before I had my CAD I did the following: Jumped on a trampoline with the grandkids and fell hard (don't laugh), carried my 41 lb dog to the car and hoisted her in because she hates cars, lugged  a very heavy large flower pot up a hill and then up stairs to our deck, pulled very heavy hoses around the yard, carried super sized bottled waters from the car to the house, lifted wts at the gym, hyper-extened my neck at the hairdresser and also by bending over using a sinus rinse.  I still have some headaches at night but never had to use the trammadol. Also some stabbing pains periodically on that right side of my head.  I'm still very tired.  I hope the info is helpful to everyone who goes through this awful experience.