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.

[sonu78]

Hi,
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.

[Melody57]

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.

[icad07]

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?

[bigangel]

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.

[jharrah]

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

[bigangel]

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.

[Nathalien1983]

You have made great recovery which is good to read. How you getting on nowadays? I pray that God heals you completely

[bigangel]

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.

[Lomama]

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)

[kbuchanan]

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.

[bigangel]

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.

[withnail1969]

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.

[bigangel]

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!

[chicneck]

I was just diagnosed with a recurrent  ICAD this past week.  I had minor car accident in 2002 which resulted in an intimal flap and I was on coumadin for 9 months.  1 week ago, I jabbed the corner of my couch into my neck, went to get it checked out, and was sent to the hospital.  Probably I re-injured the old spot, or it had never completely healed.  I'm now on lovenox/starting coumadin.  Luckily no neuro defecits either time.  I, too, am frustrated by the lack of information on how to live with this scary diagnosis.  I am a physician and have searched the medical literature.  My doctor simply said avoid exertion, but she has no idea for how long, to what extent, etc.  I'm already getting very depressed.  I have a 1 year old, a 2 1/2 year old, and want to get back to my dermatology practice ASAP.  Any thoughts?  Anyone with a recurrence out there?  Any vascular surgeons with some good advice?  Have any of you been offered or considered stenting?

[pookiesmom349]

wow, this is a very interesting discussion.  our daughter suffered vertebral and carotid artery dissections nearly 5 yrs. ago, age 31.  she did have several strokes from which she recovered quite well - still has an eye problem and she had short term memory loss.  there were no 'after event' care instructions and it was a huge struggle for her.  she went on to live her life, took up running with a group and loved it.  then this past june 13/08, a friday don'tcha know, after a run, she got that old headache.  she went to her new and hopefully good doctor when the headache didn't go away by the following monday.  doctor, knowing her history, did not treat her urgently, made an appt for a ct scan for more than a month later.  by the following saturday, headache had not resolved, she had more symptoms, so she went to her clinic and was seen by another doctor who sent her immediately for a ct scan to the er of the hospital where she had been admitted 5 yrs before.  the young and pretty neurologist on call (and this is a teaching hospital and our province's best) thought she 'just' had a migraine.  for some reason, after doing a nuclear ct scan and why they did that, we don't know, they admitted her.  she tore her right carotid artery quite high up. the neurologist pretty much told our poor daughter who was at the time all alone, that she had a pseudo-aneurysm and if it should 'pop', she was done for.  can you imagine?????  we were away on holiday and got her call at 1:20am, we packed up and left for her.  
she was checked for underlying conditions, apparently none were found and after being poked and prodded and having 2 more nuclear scans done, was sent home.  she did have a clot which is hopefully resolving and as for the psuedo-aneurysm, surgery or stenting were deemed too risky.  
the medical establishment really does not seem to have any answers about the causes, unless blatantly obvious, of this event.  however, it was our experience that the doctors did not seem to really care.  she was the topic of much discussion with the neurologists as having a recurrence is even more rare.  they never took a family history although i mentioned that 5 females on my mother's side of the family all had cerebral hemorrhages, 4 of which were fatal.  i am convinced that there is a common thread here.
our daughter is understandably quite anxious like i'm sure all of you are/were.
she is due for another nuclear ct scan next month, so we'll see how she's healing.  and her doctor of internal medicine is taking more of an interest than the neurologists.  she is going to be tested for ehlers-danlos which she may have been already checked for, neurologists did not tell us just what they looked for.
i am ready to check out the mayo clinic and see what they may know.
this is a very scary problem, as some have stated, in that how does one carry on with life - physical activity or not.  our daughter was told she could not do most all activities and for how long??? anyone's guess.....
the only 'good' thing about this type of incident is that if it is caught early and treated, recovery is good.

one thing that the neurologist told her was that if she should become pregnant, she was to have a c-section as the strain of labour could be hard on the neck arteries.......sigh.....

for chicneck - stenting was not a consideration for our daughter's events - too risky as the stents could move into the brain as her dissections were quite high.

[pookiesmom349]

i received your comment - good luck!  keep us posted.

[rline]

  Just found this site and am highly interested.  I am a very active middle aged male who suffered a dissection and full occlusion of the left internal carotid artery a year ago.  Possibly a delayed result of an automobile roll-over accident 7 months earlier.  Symptoms were drooping eye lid, morning headaches, and mild tinnitus.  
  I was told to avoid weight lifting but have no restrictions on cardio.  I work out with a heart rate monitor sometimes up to 95% of my clinically determined maximum heart rate.  I am on aspirin regimen only.  Agree that the lack of information and treatment is frustrating.  

[Fee2201]

Hi i am a 43 yr old practise nurse diagnosed with carotid dissection with clot blocking half the lumen 3 weeks ago. I was told tocarry on as normal and could go back to work in a few weeks. Since then however my first week i was soo dizzy and constantly felt i was passing out and as if my heart was stopping,this resulted in two trips to casualty who said i was having panic attacks despite my diastolic pressure of 49/53 over a period of 2 hours in A/E (im not that fit).I resigned myself that if i was dying no one was going to help me other than myself,and just to do what my body was telling me.The last two weeks i have had excruciating headache mostly in my L eye or around the socket which only respond to keeping my neck completly still for a few hours. If i fall asleep i move and the pain starts again. After numerous phone calls begging to speak to my neurologist i now have an apt next week first since discharge on the day of diagnosis. I would like to thank all contributers to this site for making me feel less alone and scared,and ask if these symptoms have been experianced and how long to expect the headches to continue?

[withnail1969]

Hi, you need the neurologist to confirm if you had a stroke. How did you come to having the CAD diagnosed. I had mine nearly 4 months ago I'm a whole lot better but still exhausted, get dizzy speels and have right sided weakness. I'm lucky i don't get the headaches. I often get pulsing in my ears if i don't keep my neck straight so i'm aware i'm restricting bloodflow in my arteries.
Best of luck

[bigangel]

I was able to procure an appointment with a high-up vascular surgeon at the medical school in San Antonio after fighting with my hematologist over the warfarin (I wanted off based on my research).  I have never seen a vascular surgeon, only a neurologist.  It has been almost a year since my dissection.  He had an ultrasound/doppler of all my neck and lower head done in lieu of another MRI or MRA (said those were good for acute care, but not necessary for ongoing treatment).  He said that the area where I dissected is stable and should be scar tissue by now.  No reason to worry about blood pressure when exercising anymore.  That I should not worry about where the dissection is but instead about the health of the rest of my vascular system.  I need to have an ultrasound every few years to make sure my GOOD arteries are still clear so that my collateral compensation mechanism can continue to provide adequate blood flow.  He wants me to continue to eat a healthy diet and exercise to avoid plaque build-up in my vessels, high blood pressure, etc.  I can even run if I want to. Still need to avoid shoulder stands in yoga and roller coasters, etc. "just in case." He said that he has seen elderly people with BOTH carotids dissected do just fine due to vertebral blood flow.  He was not alarmist, and for the first time, I felt like I got real answers instead of speculation and fear-based recommendations like I got from the neurologist (i.e., vascular surgeons see this a lot more).  He also took me off warfarin and put me on aspirin (again, because it doesn't hurt).  Said that whether or not you stroke has a lot to do with how fast the dissection happens.  In my case it was fast and that helped keep me from stroking.  Hope this helps some people.  I know it might not help those who may have an underlying condition that weakened their artery  In my case, they are pretty sure it was trauma-related due to my antics on the trapeze, so it would be like getting stuck by lightening twice to have it happen again.

[Fee2201]

hi,havent had a day without severe headache hence not got back to you. Also useless at using this site can never find right bit! I havent had a stroke and finally got to see someone this week,my neurologist who said sorry but he knows less about CAD than me,he is referring me on my request thanks to useful comments on this site to a vascular surgeon,although no idea when that will be. Here n Scotland knowone at all seems to know about this. I was diagnosed this time as i had been havig headaches then deveoped horners and unequal pupils so i knew something wrong i was given an angio an mri .Then  given this diagnosis iv Heparin and sent home all within 2 days. However I am a nurse and 15 years ago i now know  is when this really happened, i was lifting a patient of approx 30 stone with 1 other nurse when i felt a tearing in my neck i then collapsed and indeed for the next few months collapsed if i moved my neck at all.I had an mri at that time but only of my head and for the past 15 yeas have been treated like a hypochonriac.As an intelligent proffesional person i have been belittled so much over thepast years that i havent seen a doctor for the headaches i have constantly had ,after any form of exercise at all. At least now I have a diagnosis even if knowone here knows anything about it The pressure in my head behind my eyes and nose is still here along with the headache this is now week 5 after this headache and horners started can anyone give me hope of a repreve soon? sorry bout typing etc

[strangestangel]

Everyone seems so lucky to catch their tears in time.
My Brother was 37 years old and had a tear, probably from working out.
He loved to lift weights. He had a dissection which lead to an Ischemic stroke. He died 10 days later leaving behind 5 children. He was a great person and to know that it could have been prevented hurts me so much.
I had no idea. Our dad also died at age 52 of an Aortic Anyersm.

[Fee2201]

Im so sorry to hear about your brother,but do wonder,are all the people who have reassured me on this forum still well? please feel free to be in touch

[withnail1969]

So sorry to hear about your brother. He was incredibly unlucky, I think only 5% of strokes caused by CAD are fatal.
My thoughts are with you and for the five children who lost their dad.
So sad.

[icad07]

Hi Everyone,

I haven't been on this website since March.  To give you all an update, I have had bilateral CAD since Jan. 2007.  I have been on warfarin this entire time because the dissections have not changed at all.   My neurologist has decided to do a CTA, and if things haven't worsened, he will put me on aspirin.  I continue to have minor episodes of pressure in my neck and left sided headaches during and/or after exercise.  My biggest problem since all of this began has been fatigue.  Has anyone else experienced this?  I have been put on an antidepressant, which helps my mood, but does not relieve the fatigue.