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.

[r017]

Taya....I am a 32 year old police officer who suffered a CAD in June 2012 after being involved in a physical altercation with a suspect. My doctors will not release me to full unrestricted police duty out of fear of reccurrance. I was curiuous if you're hearing the same.

[Yecart1982]

Hi thanks for your comment.  I have since been back to my doctors surgery and was seen by another doctor as mine was busy.  This doctor believes it is possibly something to do with the inner ear or possibly a sinus infection, the doctor checked both ears and said there is no infection but based on my symptoms she prescribed Amoxicillin 500mg x3 per day for five days and if I do not start to feel better then I have to go back.  I am on day 4 of the antibiotics and have no relief, the pain and pressure is still behind my ear and my neck below the ear lobe and the headaches continue.  I have noticed over the last few days that when I turn my neck I get a very strange off balance feeling.  I am no use to anyone and feel generally unwell with no energy and I am into week six of feeling like this.    

[BryanFAZ]

Your symptoms do indeed sound very similar to a CAD. My vascular surgeon mentioned that dissections can occur from car accidents / rear endings, extending your neck when at the hair dressers, painting ceilings, prolonged coughing fits and so on.

My symptoms were similar – after a while I started to get mini TIA’s which resulted in me going to the ER. The medical community have a lot to learn in this arena so you may need to push. The vascular surgeon was able to diagnose the CAD from a CTA. Good luck!

[Yecart1982]

Hi I'm wondering if anyone can give me advice on any symptoms you expierenced before being diagnosed with a Carotid Dissection. I am female, 30 years old live in Scotland and suffer Hypermobility Syndrome also known in parts of the world as Ehlers Danlos Hypermobile Type.

Around 5 weeks ago I painted my sitting room ceiling over two days and afterwards I was slightly shaky and sweating due to it being hard work that I probably shouldn't have done, over the next few days I just had normal neck and shoulder stiffness then I seemed to develop terrible headaches that moved around quite a bit, they were in no set place.  I knew then I had overdone it and blamed it on my Hpermobility and shouldn't have strained my neck so much at that angle while painting.  On the fourth/fifth day after painting I noticed I had a whooshing sound coming from behind my left ear and when I lay down it sounded as if I could hear my own heartbeat it was followed by waking the next day with terrible pressure behind my left ear and a bit sore on my neck just below my ear lobe.  It has gone five weeks now and I continue to suffer pressure behind my ear that is very uncomfortable, the whooshing/hearbeat sound only disappears when I'm sleeping and I have constant headaches that start at the side of my ear spreading to my eye socket and on the top of my head.  I visited my GP at the beginning of the week and explained the whole story, he checked my ear and said there was no ear infection but gave me an antibiotic ear spray called Otomize that has done nothing.  I have searched the internet constantly over the last three weeks and I continue to find the same thing a carotid dissection.  I'm not overly worried but I'm now wondering why my doctor did pick up on anything I said and now I will need to go back on Monday and explain what I've found, I'm scared I go back and he labels me a hypocondriac.

[Tayaoz]

Hi,
I am a fit, healthy 35 yo police officer and mother of 2 from Australia and have just had an experience similar to many of you. I had 3 TIAs over five days. I went to hospital on the first occasion and after a ct and MRI was told it was an atypical migraine. I went again on the 2nd occasion and was seen by a dr for 5 minutes before again being told I had an atypical migraine. On both times I had blurred vision in my left eye and problems with speech and writing. About four hours after leaving hospital the second time, I had blurred vision then fell over as my right leg and arm had no feeling for about 10 minutes. My husband called the ambulance and we waited in the ed for over 6 hours before we were seen by a doctor. Only through the insistence of my husband was I admitted. The doctors consulted a neurologist in Sydney who didn't believe I had migraine and ordered a ct with contrast where they found the left CAD. I was put on heparin and flown to a hospital in Sydney within 2 hours. Four days later I had another TIA in hospital. Later that afternoon I had stent surgery and two stents put in place. I also had a minor stroke which thankfully hasn't resulted in any major damage. I feel extremely lucky. I am on aspirin and clopidogrel. i am just posting to share my story and thank you all for all the support and information on this site. I am also wondering when I can get back to exercise? I am not sure if I will be able to go back to general duties in policing as getting hit to the neck is not a good
idea!!! I have only been out of hospital for a week so am newly adjusting. Despite having a small stroke during the stenting, at least I know my artery is open and blood flowing. I do have mild FMD so do worry about the same thing happening on my right side. Thanks, taya

[char1975]

I just came home from the hospital a few days ago after being diagnosed with 98-99% occlusion of the right carotoid artery. I am 37 years old and have 2 young children. I exercise 2-3 times a week, eat healthy and only drink occasionally. All the tests I had done in the hospital indicate the dissection was spontaneous possibly from a run I had taken the day the symptoms started. I saw 3 different doctors the 8 days before I was admitted to hospital each diagnosing migraine. Finally (and ironically) it was during my annual pap that my primary care doctor noticed my pupils were different sizes. She sent me straight to the ER where I had CAT scan followed by MRI and MRA. I was then transferred to a larger hospital where I had a TIA and then spent the next 3 days in ICU. I am now home on Coumadin and the levanox shots until my INR levels reach 2.5. I still have eats he's an neck pain and am exhausted. Reading other posts on here I feel lucky to have come out of this without any long lasting damage, it was wonderful to read other peoples stories and see that there is light at the end of the tunnel.
Charlotte