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Interior Carotid Artery Dissection--Who Knows Their Stuff?

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.
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Avatar universal
A brief note on Internal carotid dissection.
Dissection of the internal carotid artery can occur intracranially or extracranially, with the latter being more frequent. Internal carotid artery dissection can be caused by major or minor trauma, or it can be spontaneous in which case genetic, familial, and/or heritable disorders are likely etiologies . Few examples-  Heritable connective-tissue disorders,Ehlers-Danlos syndrome type IV,Fibromuscular dysplasia,Cystic medial necrosis,Marfan syndrome
Spontaneous internal carotid artery dissection is a common cause of ischemic stroke in patients younger than 50 years and accounts for up to 25% of ischemic strokes in young and middle-aged patients.

Now you could understand why you were tested for various antibodies. With positive for antiphospholipid antibodies, Connective tissue disorders are likely.

There is basically no restriction on you going in for Christmas shopping, or working.
Care should taken of not straining too much.
Avatar universal
Wow, you are finding the same problem we are.  Let me share my husband's experiece .
He is 56 years old.  Suffered a Carotid Artery Dissection ( CAD ) in July of 2007.  Had MRI, CTA, and a cath to confirm the dissection.
Fortunately, like you, no neuro damage.  The Dr. treated with coumadin, and scanned him one month later.  The dissection had healed, showing much less narrowing.  At the 2 month scan he showed healing of the dissection, but had developed a pseudo-aneurysm.  Switched to asprin therapy, and will scan again in May.  Waiting to see if the pseudo-aneurysm will resolve itself.
My husband's doctor has put him on a restriction of how much weight he can lift, and also which activities he can do.  I think your perception is correct, that the doctors are trying very hard to keep CAD patients safe, and that they don't have alot of information to go by.  So we are all walking in an area that is under development and investigation.  I believe you, my husband, and others in your situation are going to help define and refine the future treatment.  
We do walk 1 1/2 miles a day, but probably much slower than you want to.  He has a couple of unrelated complications which are impacting his activities.  A sinus growth which resulted in ongoing infection. (just had sinus surgery) and a hernia which will need to be addressed.
Being 34 with your livelihood dependent on your performance is a hard place to be.  You are affected not only personally, but professionally and financially.  Still, I would advise caution while you heal.    We are seeking more information as to studies done on CAD patients, various treatment options, and where in the country is the best place to go for this.  
Let me know what you've found out since you posted.  Many thanks.
Avatar universal
I am a 29 year old female.  I  found out that I had bilateral internal carotid artery dissections in January 2007.  My arteries have not healed at all in 14 months.  I have been on Coumadin this whole time.  I have been exercising regularly, but sometimes I feel a lot of pressure in my neck when doing some of the cardio.  I just take it down a few notches, and I feel better.  I still lift weights, but not so much that I strain myself.  I really just want to be a normal, healthy person, so I tend to forget that I have this problem.  I try not to let it bother me, but sometimes I get frustrated with the unknowns, like what is the next step from here?  My neurologist says there is no correct answer, and he is even considering switching me to aspirin.  Is this the right choice, knowing that these dissections have not healed?
Avatar universal
I can't speak for taking you off the warfarin without the healing you would like to see, but I can say that I myself am concerned about the long term effects of warfarin over time (i.e., 50+ years), so I can't WAIT until I get to switch over to aspirin.  Now, your artery my never regain flow, but that doesn't mean that you have not healed (scarred over/whatever) to a point that it is safe to switch to aspirin.  Make sure that you are wearing a medical ID bracelet re: the warfarin & dissection.  There are lots of pretty ones you can get on line.
Avatar universal
I also have an inoperable intracranial carotid dissection.  I truly feel your pain!!  I was also extremely active and get the same answers from the doctors.  It has been over 5 months and the dissection is only down to 20% with a clot still behind the blockage, as of the CTA last week.  I am on aspirin now, thank goodness.  As far as exercise, before this happened I was an A league soccer player and competitive ballroom dancer.  Taking it easy is not in my lifestyle, especially with two teenage daughters.  Unfortunately since this happened I have been unable to continue playing soccer or dancing.  Currently I live my life around this pain.  I only do what I feel I can do because usually exercise equals pain.

My advice is this:
I can give up my activities for awhile to stay alive for my children.  I would hate to think that I had a stroke and either died or ended up in a wheel chair because I couln't take the time to heal myself.  When this is over, no matter how long it takes, I can always go back to my sports.  My pain management specialist said it best, " Arteries have many, many nerves and a carotid dissection is like having the muscle torn away from the bone, or your skin torn away from your muscle.  It is very painful and takes a very long time to heal."  He also made the analogy that going out to do sports after a torn hamstring (which I had a few years ago) would just cause more injury, slower healing, and longer time with pain.  The doctor got his point accross to me after that description.  

I do live my life differently now.  I can't stop being a mom and wife, so I do go to the mall, the grocery store, household chores, sex, and drive.  I am also aware that I can't do it all the time, or all in one day.  I have found that exercise usually equals pain for me.  I do sneak in a yoga video every now and again when I just can't stand the inactivity.  Take the time to heal yourself and listen to your body.

Hope this helps
Avatar universal
Very interesting.

I am so sorry that you are still in pain.  In the hospital, I remember saying that if the pain would just go away, I could handle the rest.  Luckily, I was pain free in about a month.  I wonder if that means that you had a worse tear and just need longer to heal?  I hope that is what it means (i.e., that the pain will go away eventually).

I started back at the gym 6 weeks post dissection, slowly, and my doctors didn't like it.  At first, cardio only, no lifting.  I took a digital blood pressure cuff with me and took my pressure regularly--still do.  At first, I had to stay below 120/60.  I secretly started lifting light weights on circuit machines about 3 months post dissection, mostly just testing the blood pressure, seeing where I could go, what elevated my pressure.  At 5 months, with no change in the occlusion (per MRA), I was officially cleared to lift as well as continue to do cardio.  Now, I have to stay below 120/85, no running, jumping, full body squats--anything to raise my pressure too high.

At first, I would have a little pain in my head-scared me more than hurt.  Recently I tried to do a short 1 hour adventure race type thing and I got a headache "there."  If I tried to run, I couldn't go more than 2 minutes without my blood pressure getting too high.  Couldn't stand in spin class.  I still can't run, but I can do a full spin class with no bp problem now.

Overall, I have been amazed at how "normal" I feel now.  I am learning a lot about the correlation (and sometimes lack thereof) between what raises your heart rate and what elevates blood pressure.  Also, it is taking a LOT more to elevate my blood pressure now that I am back in shape.

I hope that one day you will be able to exercise in some meaningful way, even if you have to take up swimming or something new.  It has been hard to face the fact that something is going to take me, and it could be a stroke.  BUT, if I don't exercise, and I get fat, it could just as easily be diabetes or a heart attack or depression.  I listen to my body so much more now, and I guess maybe I am taking a chance, but deep down, I believe that fitness saved my life in the first place ("we usually find this in an autopsy") and that staying fit (carefully) is the best thing I can do live a long happy life.

I am moving forward with my personal training goals, too, by the way!

I am still on wafarin, but for the anticardiolipin antibodies, not the dissection.  12.5 mg/day 5 days per week, 15 mg 2 days per week.  I am hoping to switch over to aspirin.

You have made great recovery which is good to read. How you getting on nowadays? I pray that God heals you completely
Avatar universal
I am curious to know how people "think" they got their dissection.  I was taking trapeze lessons and swinging upside down when I got the headache that started it all, but the doctors also said that it could have been precipitated by a car accident several months earlier or getting hit in the head by a ceiling fan two nights prior (ouch).

Seems like this happens to a lot of healthy, active people, from what I have read.

Just curious if anyone else wants to share.
Avatar universal
You said you were curious how people get their dissections.  I actually went to a chiropractor five days before my symptoms started.  So, they really think that's how I got it.  Also, don't be so frustrated by the  healing time.  The prognosis of healing is really good with a CAD.  Give your body the time it needs, and enjoy the other things in your life right now because you are very lucky to still be here!!! (That's what my doc told me)
Avatar universal
I guess my doc "thinks" I dissected my carotid from overexertion after running a race.  I have come to accept this as the cause.  My dissection resulted in a stroke and my artery is closed forever.  You were lucky!  My stroke doc says he sees many dissections in people doing less than what I was doing.  Like you, my headache started within a couple of hours of me completing the race.   Looking back, I feel that was an indicator that something was not right.  As far as exercise goes, no running again.  I spin now with a heart rate monitor.  I don't let my heart rate go above 150.  Have you considered that vs checking bp?  No heavy weight lifting for me.  I guess that would be anything that causes me to strain.
Avatar universal
You suggested monitoring heart rate instead of blood pressure during exercise.  It's good that you should asked that.  As an athlete, before my ICAD, I used a heart rate monitor religiously.  Afterwards, however, the neurologist explained that bp was a better tool for whether I was going into a stroke zone.  Basically, it doesn't matter so much how fast my heart is pumping if the pressure in my blood vessels is low because then nothing is really pushing too hard on my vessels or the ICAD area.  I have been amazed at the correlation (and sometimes lack of correlation) between my hr and bp.  They both go up when I exercise, but it is exercises that moves up and down against gravity or that uses larger muscle groups that seem to raise my pressure.  For example, I can go ninety to nothing on the elliptical and never get my bp too high (hr gets very high).  If I try to run--forget it, zoom, my bp is in the danger zone, but my hr is still pretty low!  Standing in spin class, stair mill or stair master, squats, leg press, etc. seem to be where I have to watch myself. Also, I am careful not to hold my breath during exercise, and I avoid isometric exercises (Valsalva maneuver).  Lots of people have strokes on the toilet because they are doing the Valsalva maneuver.  Another thing I have noticed is how much harder it is to raise my bp now that I am lifting again.  I think that this is partly because I am so much stronger that my muscles can handle more work without as much strain.
Avatar universal
Just stumbled across this post, it's really interesting.
I was diagnosed with CAD last week. I feel a bit frustrated with the lack of patient information compared to most conditions.
Have any of you continued having symptoms after diagnosis? I'm still getting numbness on my right side so I'm going back in to hospital tomorrow to discuss changing meds. I'm just on aspirin at the moment.
Thanks in advance.
Avatar universal
Sorry about your diagnosis.  Sounds like you are doing OK other than the numbness?  I had shooting pain in the general area for a while.  I can still "feel it" if I am too active or get dehydrated.  I had numbness in my feet for about a week afterwards on and off (especially at night).  My doctor put me on neurontin, and it did help.  It's actually an epilepsy drug, but there are tons of anecdotal evidence of it helping for other things (off-label).  It helps rewire misfiring nerves.  After my pregnancy, I took it for foot pain.  Didn't help my foot, but in a few days it totally solved my contestant feeling that I needed to use the restroom even when I didn't.  My docs also put me on norortriptyline (antidepressant).  It has off-label uses, too, but I think maybe that they just used that as an excuse to put me on depression meds since I was REALLY upset and was refusing anti-depressants.  Also, I am on warfarin vs. aspirin & am begging to get on aspirin (6 months out) because they keep upping the warfarin dose (up to 15 mg/day now which is 3 to 5 times the normal dose).  So, I am glad you are on aspirin because going and getting blood work done every few weeks is a pain.  You are right.  There is not a lot out there.  It's really frustrating.  So, please share your story with us when you have time.  It's creeping me out all the women in their 30s on this thread!
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