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.

[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.  

[bigangel]

No fatigue.  No pain.  I will every once in a while be able to "feel something "there" after exercise if I am dehydrated.  Glad you are going off warfarin.  Now Google "warfarin" and "fatigue" "depression" and see if that doesn't tell you something!  If nothing else, getting off the W will make you feel empowered, I bet.  Just not having to go in for blood tests every week (they never could get my INR stable) made me feel like I got my life back.

[Tonyinoz]

Hi All

I too had a CAD a month ago which unfortunately resulted in a stroke after a few days of severe headaches. Fortunately no serious damage compared to what it could have been.

I have my first scan since the episode tomorrow which hopefully will reveal some healing. I still have the headaches although only mild. One of the biggest issues I am facing are the after effects of the stroke. Numbness, speech and cognitivr stuff. I was on lov enox and now stable on warfarin. Mood swings are a real concern, particularly as I am generally even tempered. Some one mentioned that warfaring can have this effect. Any comments?

Hoping to be back at work part time in about a week if the tests are OK. Very interested in those who are excersising. I was very active at the Gym, spin and weight classes, running and lots of cardio work with a heart rate monitor. I would regularly work up to 95%. Now been told it's all over for me. The best I can do is walk the dog around the block.

Regards from Adelaide Australia

Tony

[bigangel]

Get 2nd opinions on the exercise from a vascular surgeon who has seen more than one ICAD/stroke.  Make sure you don't have some genetic or other condition that predisposes you to another one, etc.  You run the risk of other diseases and problems if you DON'T exercise, so you have to weigh the risks once you have good info.  Some docs who don't exercise or know much about it lump all exercise into the same category and think of Arnold S. when you talk about resistance training when there is a wide spectrum of activity level possible there.  Take it easy at first no matter what.  Talk to your doc re: monitoring blood pressure versus heart rate.  See my post re: this above.  It's been a year now, and I am running again, lifting, doing everything I was doing before.  I built up slowly to this point, starting at about 6-weeks post.  I had to fight the skeptics every step of the way.  I am also in the middle of starting my personal training business.  I wish the best for you.  Give yourself a year.  See a couple of really smart, knowledgeable docs.

[beth95]

Hi Everyone,

What a relief to come across your posts. My 45 year old husband had a car accident in Nov, 07. He immediately began to experience headaches, to the point that he had to miss work (which he never does!). Despite my nagging that he go to the doctor (I thought he had whiplash), he attributed his pain to sinuses. At the beginning of Feb. 08, he had a thunderclap headache with Horner's Syndrome. I took him to the ER, where they proceeded to find - nothing. I took him to a 2nd ER at which time they found an ICAD and he spent most of the month in and out of the hospital. I can completely understand the frustration that so many of you feel with the lack of knowledge about this injury. I have also been AMAZED at the apparent lack of concern that a couple of my husband's former(!) docs have displayed about his continuing headaches, fatigue, lack of concentration, hearing loss, vision changes and general lack of zest for life. Their attitude seems to be: "I don't understand how to treat you, so stop asking me questions, you make me feel pressured". We have just had a very upsetting appointment with a vascular doc who did his best to make us feel stupid for asking questions about treatment, prognosis, continuing warfarin, etc... He also informed us that the ICAD could not have been caused by the accident, because he didn't immediately require medical attention. I have done A LOT of research and have found that delayed acute symptoms are not all that unusual. At this point, I am taking this to the next level, treatment-wise. My question is: Can anyone recommend any doctors in the Ohio area that have actual experience in successfully treating ICAD? I am also trying to get him into The Cleveland Clinic. Our daughter is only 13, she needs her daddy back. Thank you all for letting me vent. As you can probably tell, I am very frustrated.

God bless all of you with this injury in your life. It helps to know we're not alone.

Beth95

[moonmaiden]

I had VAD in 1999 with stroke.  It is my understanding that this happens only in 1 our of 100,000 of the population and it is usually fatal. I've had a lot of problems finding information.  I even went to Johns Hopkins Hospital to see if a doctor there could help me.  I've had dizziness, headaches, neck pain, and vision problems since this happened.  I saw a Neurologist 2 years after the incident and he did a Brain MRI and MRA to confirm the dissection.  He said then that I should have died, by all medical standards, and that he was used to seeing this type of injury/incident on autopsy.  This is why there is scant information out there for patients.  I have aspirin therapy.  My right artery has become much larger and irregular in other ways since this happened, I imagine in an effort to compensate for the left artery dissection.  It is "suspected" that I also have fibromuscular dysplasia, as my right artery shows some beaded appearance.  I am like the rest of you, I don't really have a clear picture of what I should or shouldn't do.  I was lifting as much as I wanted, etc.... until last year when I became very ill again.  I ran on a treadmill, but decided to quit and walk.  Since I have gotten sicker, I am reluctant to lift any weight and also am now thinking about not getting on the treadmill, but doing light housework etc...for exercise.  It's tough when I don't know what the heck to do! As many of you know.  I hope everyone that has this condition does well in the future.

[RobinLangton]

At last, somewhere to get valuable first hand experience from fellow CAD victims.  I had an ICAD in October 2008 that reslulted in 7 transient ischaemic attacks in the first 3 weeks - fortunately with no permanent damage so far.  I spent nearly 2 weeks in hospital once I had been diagnosed.

I am an extremely fit 39 year old male, weighing 70kg (11 stone).  I used to go to the gym 5 times a week doing cardio, I always used a heart rate monitor and would average 80-85% max heart rate over 45 minutes and most days would exceed my theoretical maximum reaching up to 104%.  For those of you into fitness, my VO2 Max is 60.  I had my first recogniseable symptoms at the end of a spin class at the gym - pins and needles in right hand, reduced vision in left eye, throbbing in left eye, stabbing pain in left ear and I found it difficult to talk and could not read.

I went to my local doctor who, fortunately for me, sent me straight to the emergency ward at the hospital - they diagnosed ICAD the following day after an MRI scan.  Interesting I also had a doppler scan of the carotid arteries and they said they appeared ok!

Having spent a fair amount of time searching the internet, I now think I might have actually caused the dissection 3 days earlier playing Badminton.  I had spent the weekend playing in a tournament (which I won - singles and doubles) but I had occasional spasms in my right hand (middle 2 fingers) and after one game I had this amazing urge to each chocolate which I don't often eat.  I've now found a few other CAD patients that have been linked to playing badminton - it appears to be the stretching that can cause the dissection.  Other people have also mentioned the urge for sugar when they had their dissections.

It's now 6 weeks since it happened, I'm on 8mg of rat poison a day (Warfarin) and have to take it for at least 1 year.  I need to keep my INR high at approx 3 because when they released me from hospital my INR was 2 and I had 2 more TIAs in the next few days.  I was initially on just asparin for the first couple of days in hospital but when I had another TIA they switched me to IV Heparin before switching to Warfarin.

I'm having another MRI on 18th Dec 2008 and seeing my consultant on 22nd Dec to hear the results.  My consultant has treated 5 other CAD patients prior to me.  Fortunately I am covered by BUPA and have found a specialist consultant at Barts hospital in London, so I can always get another opinion if there appear to be any complications.

I'm eager to get back to exercising and playing with my 7 and 4 year old kids but have been told to lift no weights and do nothing that will raise my blood pressure, especially no exercise.  At this point I just want to make sure I don't go back to doing anything too quickly and risk further, more serious, consequences - I'm currently off work and taking it very easy.

Best wishes to everyone & good luck for a healthy recovery

Robin

[rline]

You and your husband have my sympathy.  His case is very similar to mine.  I had a rollover accident in Feb-07 with no apparent symptoms.  Not until Sept-07 did I have Horner’s Syndrome.  This was accompanied by mild headaches in the left forehead when waking in the morning.  Vigorous exercise eliminated the headaches, but after three weeks of friends and family nagging me, I sought medical help and an MRI sent me straight to the emergency room where angiography confirmed dissection and total occlusion of the left interior carotid.  At the time I thought no big deal.  I felt great and was put on no restrictions.  

However, over the next year I had several further events and slowly understood that my doctors were somewhat limited in their knowledge, and desire to overextend in an unfamiliar area.  Over the past several months I have developed headaches, pounding in the neck, base of skull and even upper chest, along with other symptoms and have suspected misery perfusion.  I too have sought advanced help.  A NOVA scan last month showed reduced perfusion to the left hemisphere especially in middle cerebral artery distribution.  I have a functional MRI, angiogram and cognitive testing scheduled this upcoming week to determine the need for STA-ICA anastomosis.  

There is advanced technology out there also including PET scans and much of it appears to be at university hospitals.  Here is what I would recommend.  Search for misery perfusion and review the results for multiple studies and publications by doctors/hospitals in your area.  Best of luck to your husband.  Please keep us informed.

[Kate1980]

I am a 28 year old mother of twins with a left side internal carotid dissection. I had an ongoing headache for a month and went to see 2 physicians and an ENT and finally wound up in the ER--just a migraine I was told. My father died at age 30 from an aneurysm so at that point I was terrified. I had never had a headache more than a few hours before. I still had the headache and also had an episode at work where I became very confused and had no idea where I was or what I was supposed to be doing. I went to the ER again and was told I had a confusional migraine. I refused the pain shot and pleaded with the doctor to run more tests. "You'll be fine" he said and sent me home. At about 4am the next morning a police officer woke my husband and I up knocking at the door. We had our cells on vibrate still from the ER. He told us they had found something on the tests and I needed to go back to the hospital now.
I was told about the dissection and started Heparin. I wound up in the ICU because of numbness, blinding headache and shaking off and on. No one ever explained what that was about but the next day I was put into a regular room. I was in the hospital a week. I was seen by my neurologist while there who acted as though this was no big deal and that the blood thinners and BP medicine were just because they had no idea how else to treat me. I also was seen by the Vascular surgeon who diagnosed the dissection. The vascular surgeon called in a neuro surgeon for another opinion--they disagreed with each other on whether or not it was a pseudoaneurysm. That was comforting.
I was sent home with the instructions to take the bp meds and coumadin and get my INR checked. No other instructions. I can't find anyone with experience in this area other than patients who actually had a stroke.
I have been having periods of headache and extreme dizziness. The worst part is the pounding in my ears and feeling of a head rush off and on when I'm just sitting at my desk at work! I cut back to PT at work and my husband and I moved in with my parents for help with our 3 year old twins. I am not myself because I'm normally a very busy chick who never sits. Now I can't because of the physical feelings and the fear of a stroke (the fact that my dad was so young and passed away merely compounds it). There needs to be a lot more research on this topic. It is not enough for me to sit and cross my fingers that I will not have a stroke. Also I had a 4 month scan and the dissection has not improved at all. What happens next!? Sit and wait for my life back???

[bigangel]

Kate,

First off, big reach through the computer to you with a giant hug.  I think many of us here understand how you feel, like a ticking time bomb, unable to trust what any doctor says.  I can't make any of that go away, but it will get better, and boy, what a difference a year makes.  Give yourself a YEAR to get physically & emotionally better.  Is your condition improving at all (are the headaches less and less, etc.)?  If so, that's good.  Your body has got to heal, and that could take a while.  Yeah, I know your dad died of an aneurysm, and you know what, you could die tomorrow in a car wreck.  It took me a year to get to that place.  I AM GOING TO DIE ONE DAY.  ****!  That was not in my plan.  We all die, eventually.  Wow.  Who knew?  It sounds so obvious, but it's a hard realization.  Getting past the shock and grief of being so young and having such a potentially life-threatening problem that no one seems to know what to do with FEELS nearly impossible to deal with.  I wish now that I had seen a therapist to deal with some of that.  It was too hard on my husband to have me cry on his shoulder every night.  He was afraid of losing me, too.  BUT, look at what you have already SURVIVED!!!  The body is an amazing machine, and your collateral blood flow kicked in to keep you here, and you are here now for those babies and your family.  I would guess your crazy episode that led to the ICU at the hospital was caused by your fear and adrenaline rush.  Do your headaches/dizziness now correlate to anything?  Do you have high blood pressure?  Do they go up when your BP goes up?  I know it took a while for my headaches to go away, got worse at the gym, eventually stopped.  I'm sure you have read everything here.  Not sure where you live, but seeing a great doc who has seen this before was SOOOOOOOOOOOOOOOOOOOOOOOOOOOO helpful for me.  Concrete answers.  The guy I saw was in San Antonio: Boulos Toursarkissian.  Award-winning doc.  Make sure to take care of you.  Eat right, meditate, yoga, exercise, or whatever you feel like you can do to be at your best and reduce your symptoms.  If you want to email offline, feel free.  I am happy to listen.  By the way, an update on me, just got back from snowboarding (with a helmet) in CO.  Never thought I'd be doing THAT a year ago.  I fell down and didn't die!  I even had a massage for the first time in 2 years.  Someone touched my neck, and I didn't die!  You are more indestructible than you think.  You made it past the initial critical phase.  Time to give yourself time to heal.

[Mrgrita]

I'm a 46 year old woman that has lifted weights 5-6 days a week for over 20 years. I came close to competing about 10 years ago, and still train like I am. I've had a pseudo-aneurysm in my right vertebral artery for quite some time, caused by a dissection that may be related to a car accident when I was a child. My neurologist has been imaging it since it was found in 2006. (I have suffered from migraines since the above mentioned car accident and they had gotten worse, so I had my first MRA and the pseudo-aneurysm was found.) This past Dec, I had my first CTA and the team of radiologists that reviewed the images felt that my pseudo-aneurysm had grown.
I went into the hospital on Jan 14, 2009 for a routine procedure to fix the pseudo-aneurysm and while the doctor was performing the diagnostic portion of the procedure (an Angiogram) the catheter caused a new dissection in my right carotid artery. They stopped the procedure immediately, sent me to ICU and I have been on warfarin since. They also put me back on propranolol (a beta blocker used to keep your blood pressure low) to try to prevent any migraine attacks. Since I had been on the propranolol in the past, I know what side effects it caused for me, which were minimal. However, the warfarin is making me very tired, or possibly it’s my body healing. I was told I would be able to switch to aspirin next week, so I’ll keep you all informed as to how I feel after the switch. I’m also feeling depressed and somewhat angry. Again, I’m not sure if this is a side effect of the warfarin, or just a wave of emotions from not being able to do what I’m used to.
The other disturbing fact is that while they were doing the angiogram, they saw a couple of other healed dissections in my arteries. I am scheduled to see a geneticist in a week or so, as they feel I may have some sort of collagen deficiency disorder that it casing my arteries to be fragile. Again, I’ll let you now if I test positive for any of these disorders.
It was helpful for me to see that I’m not alone in this and also, that many of you were also very athletic prior to your dissection. It leads me to believe that maybe some of this is caused by over training and that if we alter our thought process, we can become stronger. I plan on going back to the gym in a week or 2 and starting out with very light weights, and like jharrah, I will monitor my blood pressure as I exercise.
Thank you all for sharing your experiences!

[RobinLangton]

Sorry to hear the unfortunate circumstances regarding your dissection.  Without knowing the specifics of your dissection, I would say that going back to the gym in the next few weeks is UNLIKELY.  My dissection was nearly 4 months ago (still off work) and have been told to avoid any exercise for another 2 months (I have to wait a year before playing badminton again!).  

What is your INR on Warfarin?  I left hospital (after 10 days) with an INR of 2.0, within 3 hours of getting home I had another TIA.  Two days later I had another TIA caused by tipping my neck slightly back to get the last bit of smoothie out of my glass!  Following that I returned to hospital for 2 days and my INR was upped to 3.0 (approx 10mg of Warfarin).  Don't rush things.  I am going up to London in 2 days time to see a leading specialist on carotid artery dissections with the specific purpose of understanding my long term prognosis.  I'll obviously post any relevant information.

In the meantime, try and rest - I still get very tired but don't know whether it is the body healing itself or a side effect of Warfarin...

Best wishes

Robin

[RobinLangton]

The consultant I saw this week believes that dissections are caused when the artery is over stressed while the body/blood has an infection.  Perhaps this explains why so many fit people seem to have dissections - they carry on exercising when most other people would take a break....  Interesting.

I've had my MRI results (nearly 4 months post dissection) and they confirm that blood flow is back to normal via my carotid, which is good, but there is something on the lining of the artery (where the dissection occurred) that he does not know what it is.  He is speak to the radiologists next week...  :-(

For any of you folks that are still feeling young enough to have a Facebook.com account, I've created a group for 'Carotid Artery Dissection' - please join.

Take care

Robin

[romayne]

does any one suffer from any side effects such as sweating on the side of the face and above the eye also eye twitches!

[Kate1980]

Yes I have eye twitches that are driving me nuts--sometimes other people can see it but usually it is more of a faint pulse like feeling. It started 3 weeks ago after going back to the gym and walking on a treadmill. I had been told by one doctor (vascular doctor) it was okay to exercise a little and another said not to (physician)--after months of not exercising I really wanted to become more active. I have paid the price! Dull headache every day, eye twitching, pain in my neck, pounding in my ears...
Go to see a neurosurgeon in 2 weeks for my 6 month check up--at 4 months the dissection had not healed nor enlarged however my right carotid (my dissection is in the left) was now bigger than the left carotid. Anxious to talk to him about that and to get more information about where to go from here. Am getting really angry that there is such little information or help available...who can function with a headache every day! I hate to complain as I am well aware that there are a ton of other ailments that are much more horrible than this but for me in my little corner of the world, this is pretty horrible. I cannot dance around with my twins w/out feeling like I will pass out or like my head will explode, stress at work makes my BP rise and I get a horrible headache, sometimes my vision gets funny and it scares me, the pounding in my left ear keeps me up at night sometimes....ugh.

[bigangel]

Sorry to hear your frustrations.  My headache was never THAT bad but I definitely had throbbing, etc. when I exercised at first or when BP went up, or if I got dehydrated.

As far as the enlarged carotid on the opposite side of the dissection goes, the specialist I saw in San Antonio (vascular surgeon) said that was totally normal and that he was glad to see it.  He said that it meant that my body was doing exactly what it should.  The other side now has to do double duty, so the artery enlarges to be able to provide enough blood to both sides of the head via the Circle of Willis.

I also had some vision problems because the carotids supply blood to the eyes.  At first, there was pain in my right eye due to the blood flow being too slow coming around now from the other side of my head (again, Circle of Willis).  They called it optical angina.  If you have not see an ophthalmologist, it's a good idea.  Should you have reduced blood flow to the eyes, you may need to have it monitored because it can cause your body to develop additional capillaries in the eye (so it can get the blood it needs).  These can impair your vision and might need to be lasered periodically.  Luckily for me, within 6 months, my collateral blood flow had established itself well, and the ophthalmologist could no longer tell by looking in my eyes which side the dissection was on, so he said, I could go back to seeing my optometrist.

[christine44]

What a great community site.  I was recently diagnosed with a lft internal carotid dissection.  I believe I got it shoveling snow.  I'm an active 44 yo female.  My symtoms where...drooping eyelid, numbness in my left face, very painful scalp, what seemed like dental pain, painful neck and severe headaches left temple.  It happened Christmas Eve, I didn't go in right away because I thought I just pinched a nerve. However it didn't improve, so spent a weekened in the hospital, and went home on lovenox injections for 1 1/2 weeks ...ouch (early January).  I am still having the same symptoms but they are easing.  I'm on coumadin and for the headaches propanalol (helps with bp too).  It has been very frustrating to find exactly what I can do, the only instructions for restrictions where not to lift more than 20#s and to not wrench my neck.

It seems like the standard treatment is the anticoagulation but I do have an apt. with a vascular surgeon next week.  In some cases they do consider stenting if you are not healing, become fully occluded, or symptoms become intolerable.  It sounds like a wait and see game which is the hardest.

Hope to talk to you all again thanks
chris

[superlilli]

I am 42 yr. old female and was diagnosed with a spontaneous right carotid artery dissection 1 week ago. I developed Horner Syndrome ( small pupil, droopy eyelid) and severe headache on the right side with scalp sensitivity.  
2 weeks ago when I was jogging I felt a painful pinch in my right neck and from there it developed to a bad migrane and remained until I was diagnosed and started treatment in the Hospital.
I am now on Marcumar ( coumarine)  for 3-6 month. My head feels much better but my eye and scalp is still the same.
At the moment i am taking it still easy.I am very tired and try to build my strenght up. I am planning to go back to work in 2 weeks. And in 3 month i will check up how the artery looks on Doppler Sonography and if it is getting better.
Can anyone tell me if the Horner Syndrome went away after a while or if this remained the same?

[oliverrah]

I'm a 49 yr old male diagnosed with spontaneous right CAD also, in mid Feb.  I was told, very casually by the vascular surgeon, that I had a 100% occlusion in the artery. Luckily, I have no neurological deficit, save for the Horner's. It was discovered via Horner Syndrome and an extremely painful right sided headache - scalp, temple, eye, etc.  My opthamologist was worried and sent me for an MRI with contrast - they sent me immediately to the ER from there.  I've now been on Coumadin for two weeks and my headache has subsided quite a bit - they have me taking oxycodone, which I have now cut in half, plus toprol xl and lisinopril for BP and lipitor to keep my other arteries in good shape - I've been taking lipitor for years anyway.  So far, my Horner's has not improved - pupil is still smaller than the left, though it does move.  I still have a slightly droopy eyelid.  I am curious, and perhaps others can comment, on what the strategy is with the coumadin. Simplistically, I thought the coumadin would dissolve any occlusion blocking the artery and I'd be almost good as new.  I guess its just the opposite.  They (neurologist, vasc surgeon) tell me surgery is not an option, that the goal of the coumadin is to help stabilize the occlusion and prevent blood clots from breaking free from the area and causing a stroke.  I've been told to limit my activity, but I was, anyway, a fairly fit, slightly overweight (10lb) active guy, and I'm about to jump out of my skin.  I need some activity, and to put it subtly, my wife and I need some mutual activity, soon.  Should I seek a second opinion about long term strategy, surgery options, medications?  Sitting on a 100% occlusion seems to be universally accepted, but this was based on one ultrasound.  It will be repeated in 2 weeks.  Is there a better test - is MRA more accurate?  If it shows, say, only 90% blocked, isn't surgery a huge risk for stroke?  And what does a healed dissection really mean?  Thank you, thank you everyone and anyone for this forum - I read every post on this site and I can tell you its a relief to be able to relate to you all.  I feel for all of you, but stay positive!  Good mental attitude can only help, I think.  By the way, by CAD occurred in the middle of a bad cold - believe it or not, docs think a particularly bad coughing fit was responsible.  I was wrestling with my 21 year old son a couple weeks earlier, who got me in a real tight headlock, though....I will never know for sure.

[BikeGuy]

I had a left ICAD in Oct.07. In Feb. 08 (4 months later) they did a CT scan and a 4 Vessel Arteriogram. It showed that my artery was all but occluded. About 1% open. My Neurologist said it would soon totally occlude.

Nine months later I had a Doppler Ultrasound that came back "No stenosis, or occlusions." To get another opinion I got a CT Angio and the results were "reconstitution of blood flow and artery now appears normal."

During the time I had this I soon learned that the Dr.s I saw really didn't know much about it. They contradicted each other. The Whacko Neurologist I had was worthless while my GP, who was the only one that actually knew something about ICAD's, acted as if it was no real big deal.

Here's a quote from UCLA Medical Dept. talking about ICAD's "Over time, the stenoses resolve and the occlusions recanalize."

If it does totally occluded your body has ways of compensating. Bigangel has alot of good info on that!!

Give it a year and see how it goes.

You'll learn more from some of the posts here than you will from some Dr.s.

Hang in there

MJ

[Cossette]

I also had Horner's Syndrome as a symptom of my dissection.  My doctor told me it would take a full year to know the final outcome of how well it would resolve itself.  After one year my droopy eyelid was about 90% better.  The constricted pupil remains smaller however did improve slightly.  I also felt like I needed to wipe my eye frequently (as if it were slightly foggy) for almost a year.  Now this only occurs occassionally.

[MTCP]

You peaked my interested with your comment about UCLA.  I was recently released from UCLA with a diagnosis of bi-lateral carotid artery dissection.  One side is completely blocked and the other is 70% blocked.  I'm 43 year old female and the only symtom I had was two apparent TIA's which landed me in the hospital for thier full investigation.  According to all the tests - they believe that these are spontanious and not related to any other underlying vascular disease (or FMD.)  Perhaps the result of an injury to my neck 3 years ago.  Who knows.  My days since being back from the hospital have been up and down - I'm back at work.  I'm told not to restrict any of my activity (exercise, travel, etc.)  - I'm on Coumadin & Lipitor (for prevention) - but seem to have a rotational source of issues. No day is the same.  Sometimes some "slight" numbing in my face, or my hand, or my foot....slight momentary dizzyness (almost as if I'm dozing off...) I've been back to the emergency room two times (in two weeks) in case they were stroke....nope MRI/MRA's say I'm clean. Neck hurts - which causes stress on the rest of my body.....  My eyes get weak rotationally too because of the blood flow to my ocular nerves.  

My new problem (which we thought was anxiety - something I never have had - I'm a pretty level headed low key person) is sudden onset heart palapatations....Dr.s think all the dye/contrast  they put in me for CT Scans & MRI's /MRA's may have put my Thyroid out of whack too.  Although the -  Adovan helps with some of the symptoms - frankly I just think it takes the "edge" off so I' can actully function and am not so ultrasensative to every sensation in my body....I'm told that is not a long term- solution.

The Neurologists seem optimistic that these things will heal on thier own....but frankly don't have a lot of information.  "this is rare, there is controversy on treatment....."  they say.  So the research says 75% heal with anticoagulants, 5% mortality rate.  What about the other 20 %?  What happens if they don't heal? Is surgery an option? Stints?

I'm very young - and until this have been extremly healthy.  Has anyone researched a leading Neurologist in the US that seems to have a clue about this.....I feel like I'm a walking timebomb...... Thanks in advance for your ideas and insights.  I've been fairly impressed with UCLA - but they haven't done much to give me any idea what to expect from this condition.

MJ - Two

[MTCP]

Hi Robin,

Thanks for the tip on Facebook - I joined.

MJ Two

[oliverrah]

Wanted to post some good, hopeful news for folks out there.  I had my follow-up ultrasound last week (5 weeks after initial incident, when I was diagnosed with right CAD with 100% occlusion) and the new study shows I am completely clear!  No blockage, and the tech, who has been doing ultrasound of carotids for 20 years, says she can't even tell I had a dissection!  So I'm ecstatic, but seems to good to be true.  My left side and both kidneys look great as well. I do still have the Horner's and some neck pain, but very tolerable.  I have been told to restrict activity for 3 months by the vascular surgeon - no sports or any activity which might raise my BP.  I am feeling better overall.  I have weird feelings in the neck area some days and seem to be slipping backwards, but generally my progress is forwards.  I still have to take Warfarin for 3 months but they hope to move me to aspirin. I have to have another ultrasound and a complete CAT scan angio(??) in 3 months, not sure what the CAT scan test is. I'm told the pain can linger for quite sometime, as well as the Horner's.  I plan to keep reading and posting what I learn on this site, as I still don't understand this whole thing and will likely be at increased risk for the rest of my life.  Good luck to everyone and stay positive.

[MTCP]

That's great news.  Are you being treated at UCLA?  I'm curious if you have the same neurologist(s) as me.

If you prefer not to say via this board - you can e-mail me at ***@****.

MJ Two

[bigangel]

I would ask why not an MRA instead of a CTA.  The MRA is supposed to be the gold standard in the acute stage.  My dissection was suspected on MRI (sent to ER), missed with CTA (sent home), then confirmed with MRA.  Although, my surgeon says ultrasound should be enough for follow-up (non-acute).  So, consider the cost and the radiation of the CTA.  Maybe get the ultrasound first, then do the MRA if needed??

You sound like you are doing really well!  I realized some of my neck pain was from trying to sleep so still, not move my neck, etc.  My Horner's went away over time as blood flow re: Circle of Willis improved.

Best of luck to you!!!

[ggreg]

All,
Here is a helpful website that discusses carotid artery stuff as relates to athletic people:

www.aafp.org/afp/20020801/445.html

I personally believe car wrecks, however minor, are how come so many get their neck artery tore up.
GG

[nolester]

I am in my late fifties and, until this, was very physically active with running road races, bicycling hills, lifting weights.  My blood pressure is normal.  

I sustained a dissection of the internal carotid artery, on the left; diagnosed after the appearance of Horner's syndrome following a period of severe headache and "ear ache" and an initial diagnosis of mild ear infection.  I sustained the injury in late January and was diagnosed in the first week of February.  I am taking warafin (coumadin) (forgive my spelling), to lessen the likelihood of stroke.  I have 50% closure of the artery and perhaps some anueurismal feature causing the Horner's.

I have been told to take it easy.  My general practitioner has OK'd brisk walking and light weights....

I still have occasional pulsing sensations felt near the left eardrum that seem like arterial spasms to me.  I have a sensation of pressure in my head, like hanging upside down, to varying degrees and daily.  I have it strongly if I bend over.  

My neck and head have an odd pain when bouncing in a car over rough terrain, etc.  

I feel improved in that I have not had a terribly severe headache in weeks.  But I get focal headaches with stress.

I work an emotionally/psychologically stressful job (litigation attorney) and after a tough phone call, or even a laughing/fun call, I get exhausted and some pain and increased pressure.  

I have been walking leisurely, until the last two weekends when I started brisk walks. After the walks, but not right away, the pressure sensation in the head seems increased.  This week, it lasted for two days, following a four-mile brisk walk. (But for the injury, I would have run five miles).  

I am set for a MRA to take place early next month.

My question has to do with the reasons for the inactivity, and how to approach this issue at this stage.  Should I just regulate the degree myself, based on how I feel?  If so, I would push it up to the point where there is head pain or where I get a full, pressured feeling during the walk...  I suppose.  

OR, does the exercise delay healing? Am I delaying healing by taking troublesome calls from argumentative people?  In other words, if I felt no symptoms, should I STILL not do anything physical or stressful?  I am not sure you understand my question, but hope so.  In a way, I would rather not live a sedentary life just to rule out any chance of a fatal rupture; but I am willing to do so IF it aids the healing so I can, after months of inaction and weight gain, I can get back to running or biking.

[RobinLangton]

Sorry to hear you've had a dissection and 'yes' I understand your question; although you may not like the answer!  In summary, everyone is different.  Some people have gone back to exercise quickly, some have not.

I have two young children and I cannot afford to take any risks, so I chose (under advice) to refrain totally from exercise for 6 months (I returned to work yesterday - dissection Oct 2008).  This was difficult, as I was an extremely active person pre dissection, but I believe it was the right decision for me.

Personally, I don't think it's worth the risk to exercise (beyond walking etc) until you have some form of MRI/MRA confirmation that the dissection has settled/healed.

If you create an account on Facebook.com you will be able to read about over 25 people's experiences of CAD on the "Carotid Artery Dissection" group I created.  I've found it really beneficial to be able to understand how other people have dealt with their dissections and to be able to contact them directly.

Best wishes for your recovery and I hope to see you join the Facebook group soon...

Robin

[RobinLangton]

sorry, one last comment, having re-read you post....

For the last 5 months I have 'felt' that I could just get up and go and do a 5 mile run...  The only thing stopping me was the fact I didn't want to have a stroke

If you have pulled a muscle you can try using it and see how you get on.  With a torn artery lining (and the prospect of a stroke) it's a bit like playing Russian roulette if you try exercising too early you'll only find out when things go wrong.  You may be ok... the alternative isn't an option I think any of us want to consider...

Take care

[possible_icad]

Hi

I have read these comments with interest as I am waiting to find out if I have a coronary artery dissection. I'll post my background and experience in case it helps someone. I agree there is little info available and this resource is really useful. Apologies for the long post. I have a few questions at the end of it.

I was in a car accident a year ago. It didn't seem too serious, both cars needed repairs but I felt no need to attend a hospital. I am generally healthy, under 40, low blood pressure, no illnesses...

Following the accident I have had neurological symptoms which are persistent one year on. These include pain in one side of the head and face, dizziness, vertigo, nausea (diagnosed as hemicrania continua - a type of 'chronic daily headache'). I also have a prolapsed disc, this  spinal injury is in the neck and may be linked to tearing of the artery in the same region. The prolapsed disc causes numbness and tingling in the hand, on the same side as the headaches. I also had an orthopaedic problem in my hip (same side again) which had now been operated on. I have neuro symptoms in that leg, likely coming from nerve damage during the surgery.

I also have pupil assymetry (with pupil smaller on the same side of head / facial pain, although it's the other pupil that is slow to react to light)

I saw a neurologist a few days ago who recommended brain MRI and MR angiogram. The tests were done two days later (yesterday) and I had a followup appointment to see the neurologist a month later, but the radiologist came to speak to me after the scan and 'suggested' this be moved forward. I now have an appointment in 10 days (the neurologist is on holiday until then.) I have had 5 or 6 MRIs in the past and the radiologist (Doctor) has never spoken to me before, it's always just been the radiographer (less qualified, though I don't mean to insult) so I am wondering if it is significant that the senior person spoke to me, but also thinking that if something has shown up on the scan, at least I'll know what I'm dealing with so it's a good thing.

After reading the information available here, I recall things that have happened since the car accident that fit with the CAD diagnosis, e.g:
- temporary loss of vision (a shimmering rainbow shaped arc in my peripheral vision which lasted about 5 days, another time a hole in the centre of my vision, also lasted a few days - Dr said probably migraine)
- slight problems with speech which are persistent, almost like I have a slight stammer
- feeling like I have lost half of my IQ, general issues with concentration etc (again persistent)

From your experience, if I experienced a CAD or even a TIA last year, would this show up on scans (brain MRI and MR arthrogram) done up to a year later?
If the scans are negative, could this be a false negative?
Is there any research or other info on necessary lifestyle changes for traumatic CAD?

thanks in advance,
Katie

[possible_icad]

Hi again

What I meant to ask in the post above is:

If the scans are negative, does it matter if it's a false negative (i.e. there is a tear but it's not spotted because it's so small or has repaired etc.)

thanks again,
Katie

[possible_icad]

Useful web site:
http://www.nature.com/nrneurol/journal/v4/n1/full/ncpneuro0683.html

[oliverrah]

Good question on the MRA vs the CT Angiogram, but both the vascular surgeon and the neurologist agree that the CTA is the test they want - that two docs agree on something is unusual, and it gives me a little confidence, but I will ask that question.  

A general question to the forum - does anyone else on Warfarin experience prickling/tingling/burning sensations.  I get this in both arms and legs, and usually more on one side than the other at a given time, but most times, I don't feel it at all.  It is actually slightly painful when I get it, but the docs all agree that if I am getting it on both sides of my body it is not likely to be neurological, but rather, one of the multitude of drugs I am taking.  I strongly suspect the Warfarin, and have found some reports of this side effect on the internet, but as I'm guessing everyone on this forum has experience with Warfarin, I'd like to hear what others have experienced regarding side effects. None of the docs seem too excited by this side effect...the more I learn about Warfarin, though, the more I want to get off it.  Seems even the docs recognize that the good just barely outweighs the bad with this drug, since they want me off it ASAP as well.  I think they know the Warfarin is causing this prickling, they just don't want to discourage me from taking it as they believe it is necessary for now.

[raschmitz19]

I had my stroke 5 weeks ago following a 16-mile marathon training run; I think that the CAD that caused my stroke was possibly due to a fall a week prior, but of course, I may never know for sure.  I think that reason that the stroke happened that particular day  (rather than any of the other days I ran) was that I got dehydrated from my long run.  I felt dizzy the day before (a very unusual feeling for me), I felt great during my run, and I felt utterly terrible after the run (major dizziness, mild headache, and fogginess). I knew something was wrong, but I didn't know what.  Even later that night when I had my stroke, (slurred speech, inability to walk or hold things in my hand, weakness, numbness) my husband and I chalked the strange behavior up to dehydration...I'm 29...I didn't know the symptoms of a stroke.  Thank god for WebMD - it told me to go the ER immediately since  I had feelings of one-sided numbeness.  The ER docs diagnosed me almost immediately with a stroke.  The MRI, CT and angiogram confimed stroke caused by CAD.  I spent a week in the hospital doing tests, regulating coumadin, etc.

I was told by my doctors not to weight lift, but no other restrictions.  I went back to work 8 days after my stroke and I got back on the treadmill not long after that.  I know that I may be completely nuts for this, but I finished a half-marathon this weekend.  I moitor my heart rate and my BP when I run (after having read this thread) and my BP stays low even when I run.  I'm generally 110/70 during the day and about 120/80 when I work out.  Not often, but there have been times when my BP is higher than my work-out BP just randomly thoughout the day, perhaps due to stressing out about all of this!    Fortunately, I don't experience headaches after working out.  Mostly, I am freaked out/anxious about the lack of infomation and the conflicting information.   My doctor never told me to not work-out; even after I told him I was a marathon runner and very active ( I am a restaurant manager so I spend 8-10 hours a day on my feet). I felt great when I got out of the hospital and I jumped back into my normal life (albeit a slightly slowed down life).  Then I read this thread and I got completely freaked out.  Should I be running; should I be doing any of the things I do?  It made me feel not only anxious, but it made me feel physically worse.  I kept thinking of the thing that my brother said to me in the hospital "you can either 'fear the day' or 'seize the day.'"  But which one was the wiser option?  I still don't know.  I went to my one-month follow-up and again my doctor told me no exercise restrictions.  My CAD has not been diagnosed as healed.  The person monitoring my Warfarin also told me "exercise is a good thing."  Well, usually she's right.  I don't know the answer to this question, but I'm pretty confident after reading all the various medical opinions of the poster's here and finding the absolute lack of concrete studies on the subject that no one can say for sure.  For each person, I guess you must assess the risks and the benefits and see what makes sense for you.  

[nolester]

Let me re-ask my question, perhaps more succinctly:  Are restrictions on all strenuous activity, such as running or hard bicycling, during the first six months after an ICAD, placed in order to,

A)  Make stroke or rupture less likely; or
B)  Facilitate "healing" of the dissection.

If the former (A), then, personally, I will evaluate the risk based on the extent of closure of the artery, the pressure feeling in my head, the degree of activity, and my risk tolerance.  

If it is the latter (B), then maybe I would be willing to be a slug for six months to get all healed up and back out there sprinting in a road race.

I dearly hope my question is understood, though I fear the answer is either (1) "Yes," as in "both"; or, more likely that it is  (2), nobody knows, or there is no consensus, etc.  

I have not seen anything on line that gives an answer.  Here, folks seem to focus on (A), saying that the orders are to save yourself from stroke, etc., and not on (B) at all.  

Thanks.

[RobinLangton]

I'm not a doctor and am not offering medical advice....

'A' (stroke or TIA) is a potential symptom of 'B' (healing) not occurring.

We are given anti-coagulation medication to reduce the risk of 'A', eg embolic related stroke resulting from clots formed by the dissection

Rest and reduced exersion help reduce blood pressure and blood flow to help improve the chances of 'B' - healing artery.  This also helps reduce the risk of 'B', occlusion related stroke symptoms.

It seems you have already decided how you want to approach this and just want someone to say, "yeah, it's ok to exercise" - at the end of the day, the risk is... no-one knows.

If you wanted to repair a leaking hosepipe you would ideally minimise water flow first, to reduce pressure, not turn it on full!

[nolester]

I'm sorry.  I was not given blood pressure medication, nor told to reduce blood flow.  To the contrary, I was told blood flow was good.  I was given warafin, an antiplatelet medication I gather, to reduce the likelihood of clotting at the point of a 50% closure.  My blood pipes are not leaking.  

I don't want to needlessly elevate my blood pressure, either.  I guess my question is whether the increase in blood pressure associated with, say, brisk walking or even typing this, delays or hinders healing.  I think the answer is that it we, on here, don't know.  We do know that increasing blood pressure is a potential problem in so far as complications.

[robert833]

This is a very useful forum.  

I am a 58 year old male, now have left carotid artery dissection.  It started as a very sudden pain over my left eye and red eye.  My story is that I had a bad sinus problem, bad cough prior.  I also was painting not too long before I got the eye pain, red eye, drooping eye lid, lost sense of taste for sweet taste, left side of head dry--right side moist, all textbook Horner's Syndrome.  I have mild high blood pressure, take meds.  My primary care doctor did not catch my Horner's as being related to possible CAD--this is very common as I understand it. I was given antibiotics to treat for sinus infection, which I did have with a bad cough.  When after 15 days eye pain did not go away, I got CT scan that showed the artery dissection.  Now I tell everyone I see to get to ER ASAP to have CT scan if they have signs of Horner's--especially pain over one eye. I spent 7 days in hospital on heparin then coumadin (4 mg) at home.  I also take percocet for pain--it works very well for me, so try it if you have pain.  I had no signs of stroke--very lucky.  I was told the artery dissection has ~ 75-85 % chance it will heal itself within 6-9 months.  The eye pain is caused by disruption to optic nerves that surround the carotid artery--pain usually goes away just before the artery heals--but sometimes never goes away.  I doubled my lysinopril to get my BP lower--I now am in 115-73 range.  I was told it is very important to regulate BP while the artery heals itself--makes perfect sense.  So, lucky I am retired and can just take life one day at time with little stress.  I do walk, drive, do light yardwork but no lifting of any type. Just had my second CT scan--no results yet. One Doctor was very up front--she just said no body knows the answers to most of my questions about how much activity is too much.  I say, leave the experiments to the lab rats, I plan to take it easy, but not become a couch potato either.  I'll bookmark this forum and report back from time to time.

Robert

[nolester]

I just got the results from a three-month follow-up MRA scan.  The results were very good but leave open many big questions.  I will fill you in, adding details about the first scan that now seem important to me but didn't at the time:  

My first scan, the diagnostic one, showed the dissection in the cavernous and petrous regions of the artery, which I figured out later are the portions running through one of the sinuses (cavernous) and along the top of the ear canal or over a bone above that (note: I am not an expert on any of this!).

Recall that a month before my Horner's syndrome, I had, supposedly, a terrible ear infection:  very painful and it went away with antibiotics. For the ensuing few weeks, however, I had a subtle, nonrhythmic "tapping" sensation inside that ear, it seemed; and that the dissection was on that side (I think the tapping was the artery in spasm or something).  Then, a couple weeks later, I went on a very strenuous dive trip followed by the cascading symptoms of dissection and the diagnosis.

That first scan showed, back them, and in addition to the dissection, inflammation of the sinuses on both sides.  Regarding the latter finding, I asked my vascular surgeon about it at the time (I have had no surgery, only coumadin), but he seemed  unimpressed; and I had been diving before the onset of the ICAD, so I blew it off as having been related to that activity. That first scan was an MRA with contrast.

So, I just had a follow-up MRA, but without contrast, three months after diagnosis.  The great news?  It showed NO signs of the dissection!!  

However, I am still _very_ symptomatic, and the Horner's is still very much evident to me.  

These issues emerge with the latest scan.  First, I have come across an article indicating that a MRA without contrast can miss up to 10 percent of dissections.  Second, the report said the scan was not sensitive enough to show aneurysms 5mm or smaller.  (My vascular doc says 5mm is very small!  hahaha)  Well, with regard to the latter, I have to wonder whether the aneurysm bulges out with activity or blood pressure but was receded at the time of the scan!  After activity, like riding a bike up a hill, I feel "inflated" in my head for up to two days!  

My doctor then concedes that, if it were him, he would have one of those studies where they open an artery in the groin and introduce contrast media first.  This is after he tells me that the textbook reading of my new MRA is that I can just go back to normal.  He thinks, thankfully, that I need to consult a neurologist; so that is up next, or second.  

I say it is up second, because this second scan ALSO showed continuing inflammation of the sinuses, bilaterally!!  This makes me wonder, especially given all the mention of sinus infections in this thread, if maybe my ICAD was caused by the ear infection of a month before the major onset (leaving me with that "tapping" in the ear sensation a month before the strenuous dive trip and the ensuing headache, Horner's, etc.).  I wonder if the ear infection didn't also involve the sinuses, and additionally if I still might have such a thing going on!  So, on my own, I have set up a consult with an ENT (ear, nose, throat) doctor.  

But the scan, per the report anyway, did not show any closure of the artery.  So, the question of discontinuing coumadin came up.  Most of the literature I have seen stakes out a protocol of coumadin for six months followed by aspirin therapy.  This was when my doc suggested "he" would get the scan with the contrast through the groin-located artery . . . . before "he" would discontinue coumadin if it was himself on the line.



Major note:  My doctor was most interested in this very recent study I found, entitled "Aspirin vs anticoagulation in carotid artery dissection. A study of 298 patients," located here: http://www.neurology.org/cgi/content/abstract/WNL.0b013e3181a2a50av1.   There is a link to the full text on the referenced page.

Also, let me say that during the three months leading up to this very good scan report (especially good if you don't consider the "holes" in it I have just described), I did refrain from strenuous activity.  But I did go on some brisk walks and once, 10 days before this recent scan, I found myself on a bicycle with a lovely lady in a beautiful place, and on some hills that I just "had to" sail down and pedal briskly up.  I was, frankly, worried (as my above posts on here reveal) that I might have slowed healing by what I was doing. I had no clue either way. So it is great news that the new scan says, "healed" at three months!  

But I still have an inflated head feeling with even a little activity, a sore neck at the base of my skull, cluster headaches with stress or strain or even tension, droopy eyelid and a bit of sagging face on that side, eye pain, fatigue, etc.  

I am hoping that the ENT consult will reveal something helpful and that the neurologist will look at the films and the article and either take me off the coumadin or agree that another scan is in order.  

My vascular surgeon, if I had not told him my current symptoms, would have cleared me to return to scuba diving and probably running too.   But I am restraining myself, listening to my symptoms, pending further consultations.  I'll report back, if you do. :)  

Cheerio...

[nolester]

raschmitz19:  I was very interested in your post on here.   Indeed, this thread, I think, was started about questions related to activity after CAD.  

How do you measure BP while you run?  Do you stop to check it?  When you ran your half-marathon (I have run a bunch of those), do you race?  Do you, say, sprint at the finish if necessary to perhaps pass an age-group competitor?  

I am so afraid that if I get to the point where I can run again, and I am optimistic that I will, that I will literally drop dead or stroke out if I sprint or if I charge up a steep hill running or on a bike.  

By the way, a buddy of mine told me his doc strongly cautioned against over-heating or dehydration and indicated "we" are especially prone to "heat stroke."  Any views on that??

[raschmitz19]

To answer some of your questions as best I can, I monitor my BP before and immediately after running, but it is harder to get a reading "during" my runs because the wrist BP monitor that I own is sensitive to movement and isn't always coorperative.  I know that BP drops quickly when you stop so my "actual" high readings might be higher than I quoted above.  I'm not sure whether a temporarily increased BP is prohibitive to healing, but I can make rational arguments both for and against it.   Well, to be accurate, I can see how increased blood flow, maybe not high BP, would be helpful to healing.   I guess I will find out how my healing is going when I return for my three month MRI (thankfully with contrast!).  

When I ran my race and when I run now, I do take it easier than before my CAD.  My distances are shorter and I run at a slower pace, but I still try to run at least 4 times per week.  I finished my half in 2h02min, which while it' not close to breaking ANY records was still a personal record for me given the circumstances.  

I can say that I don't feel awful after I run....to the contrary I often feel better.  BUT, I recognize that I am unbelievably lucky to be so asymptomatic.  Most of my "issues" can be traced to the coumadin (feeling cold; taste distortion); to my stroke itself (lingering numbness in my hand and foot; temperature sensation issues); and to the stress of having this happen in the first place.  Occasionally, I have a kind of dull pain in my neck, but no headaches.  A few weeks after this happened, I did feel a pressure in my neck itself, but that has gone away since.  I think if you feel worse after you work out, then you probably should let your body guide you.  I was very hard on myself physically (one of the reasons I think I had a CAD in the first place), so I am learning to just relax and enjoy what I am able to do and not always lush myself to go faster, further, harder.  I have let myself "quit" during a run or walk uphill if I feel like it, which is something I never would have done before.  I am running now for the pure enjoyment and not worrying so much about my performance.  It seems to be working for now.  I have gone over two months without issues or another stoke....so I am getting less and less anxious and more and more positive about a full recovery.

As far as dehydration, I think that it is a factor.  I stay VERY well hydrated at all times now, even when I'm not running.  While dehydration alone won't cauise a stroke, it is a precipitating factor and something I would like to avoid.  

On another note, when I went into the hospital, I had sinus issues as well, but they included full-on runny nose, as well as mild headache.  Could just be my Midwest alllergies; I'd have to review my angiogram to know for sure if my CAD was near my sinuses.

In the meantime, I'll keep you posted on my recovery; please do the same.  

[John_Criggle]

Hi Folks,

I am not sure if I even had a carotid artery dissection, so my question is what were your symptoms?  I have terrible pain in my right neck.  Pain gets worse after exercise, or when I get up very quickly.  Hard to swallow, and yawning causing mind-blowing pain.  But, I do not have a headache, and I feel fine otherwise.  My pain started 5 hours after lifting weights.  It has been 10 days, and I am considering going to the doctor.  Do you think I have a dissection or did I just injure my carotid artery?

[robert833]

Hello,
I have an update.  My recent CT scan taken ~ 48 days after the CAD first happened indicates the artery has healed.  My CAD was about 1 cm length.  However, some of my symptoms of Horner's syndrome remain, including the eye pain, but much better than before.  So it looks like my CAD is healing itself.  I was told I will be on coumadin for 6 months then a final CT scan and I should be good to go.  

[bigangel]

I think I speak for all of us in saying that we aren't touching an attempt at a diagnosis with a ten-foot pole. I also think everyone would agree that you should see a doctor (or two) who will not just dismiss you but will really work to pinpoint what is going on because it sounds really strange and like it could be serious. As far as carotid dissection goes, I will say that just in reading this thread, you will see that everyone's experience is unique in some way or another. I hope the best for you. Take good care of yourself.

[oliverrah]

Catching up on this thread and have good and bad news to report.  Had a CTA at the end of May that came back perfectly normal - great news, the vascular surgeon told me.  He also told me to continue on the coumadin and be  careful with activity for at least three more months.  My PCP agreed - light aerobic excercise, golf if I take it easy, and coumadin until September.  Bad news is, I tried some light elliptical with no resistance and easy swinging golf, and now have worsened neck and eye pain, in both cases I feel due to the arm movement. Still have the Horner's, too, though the eyelid droop is better. My neck pain is actually in the throat area and even the ear, and is worse when I talk a lot or laugh - does any one else get this?  I am frustrated because I still have to take a half an oxycodone every other day or so for pain, since I can't take advil or aspirin with the coumadin.  What do other folks take for pain?  I'm frustrated with this setback, and wonder if I need to go in to the vascular surgeon now for a new ultrasound.  I'm really frustrated by the pain.  Though its not agonizing, its wearing on me day after day.  A 6-12 month recovery time is looking more and more realistic, and I guess in my case I may have rushed it, but its hard to feel like such a lump. Agh!

[John_Criggle]

I have a doctor's appt set up for next week, my neck is killing me, but no major headache yet...

I have a question for all of you.  How much pain in the neck and head does your dissection give you?  I know the stroke symptoms can be scary, but how much actual pain have you felt?  Does the pain subside over time?  Like a month after your CAD?  Or is the pain constant and never gets better?  Thanks.

[raschmitz19]

The amount of pain in my neck is very mild.  It feels to me like an inflammation or stiffness rather than an outright pain.  But as Bigangel said, everyone has a unique experience with this injury.  I have not had any headaches with this, but I do occasionally feel very light-headed or "spacey" like I can't quite concentrate as well as before.  Again, I can't pinpoint what symptoms comes from where....is it the CAD itself or my resulting stroke?  
At first, I did not notice any pain in my neck.  I think that the discomfort has actually gotten worse as time goes on.  (This is almost 4 months now since my stroke and I don't know how long since the CAD began since I was asymptomatic until my stroke.) I am due for my follow-up MRI  on Monday, so hopefully I will know if things are improving, stagnating, or (god-forbid) getting worse.  I am very lucky that I do not feel worse after exercise, so I have remained fairly active during my recovery.  I avoid yoga and weight-lifting because I am very afraid of stretching, twisting, turning or straining my neck, but I run regularly.  In fact, I move my neck so little now that some of my neck stiffness could just be from not stretching.  Reading these posts is good to see what other people's experiences have been, but it also highlights the fact that everyone has a very different recovery process and that our doctors are still learning about this injury.  There is no guidebook.  I will post my MRI results when I know them.  Thanks for everyone's stories; they are a major support system.  

[John_Criggle]

Thanks for that information raschmitz19.

This injury baffles me more and more.  How can you have torn an artery in your neck and not feel much pain?  I was told that the arteries are filled with very sensitive nerves, yet people can tear them and not feel anything.  Then one day start having stroke symptoms...  Who knows maybe it depends on exactly where the tear occurs.

I am totally the opposite.  I am having lots of local pain as if a knife were lodged in my neck, but little to no stroke symptoms.  

[nolester]

I am five months into this and have started back with some very active stuff.  

First, let me say that I have concluded that I had my ICAD a month before I was diagnosed.  Recall that in early January of this year I had a terrible ear infection, or so I thought.  I took antibiotics and the pain went away, but for the ensuing few weeks I had a mild "thumping" sensation in that ear, just like you would get if you were to slightly tap the side of your face right up near the ear canal.  Now, I realize that this "tapping" is actually a spasm of the carotid running along there, like a twitch or something; and I know that this sensation is associated with my ICAD.     I suppose it is possible that the "ear infection" caused the dissection, but all I have seen on this theory is something in wikipeadia, no other source.  So, I think I had a CAD, in early January, misdiagnosed as an ear infection.  

I had a fairly slow January until late that month, when I went on a very vigorous dive trip, hoisting lots of heavy scuba tanks, etc., over several days.  A few days after that, I thought--and my doctor's office thought--the "ear infection was back."  But actually, I believe, the CAD had expanded up the artery to cause the pain which involved the whole side of my head.  (My dissection is an ICAD and is intracranial, so I have no neck pain.)  

But because I thought it was "just" an ear infection, and that more antibiotics would wipe it out, I kept running and working out fairly hard.  A week later, I believe, it had progressed up along the  artery to the point where the Horner's syndrome showed up; and, of course, this changed everything and I was properly diagnosed within a day.  

I was diagnosed by one of those MRI's with contrast where you go through a tube and it takes a long time.  Ultimately, I was on coumadin and "take it easy" instructions, to get re-scanned in three months.  I had eye pain, facial sagging, droppy lid. I had headaches at the slightest stress, and pressure in my head, etc. etc.

Three months later, having dropped all my activities of running, biking, working out.... I had another scan.  Result?  "Healed."  But the scan this time, the machine and all, was WITHOUT contrast.  An article I read afterwards said that up to 10% can be missed without contrast.  Anyway, the scan was good news.  Also, due in part to an article about a recent Swiss study of 300 patience, I was taken off the coumadin in favor of aspirin.

As for activity, I was referred from the vascular surgeon to the neurologist for consultation.  He tells me I am OK to do anything but those sports with a lot of jerking-sideways of the head....  Well, I have my doubts.....

I have begun running some, and think my eyelid might be more droopy after running....  I have had headaches the day after running, but that has subsided.  I am biking some and lifting fairly light.  But when I bend over, I feel tremendous pressure; and I get the tapping of the artery near the ear, as well.  So, I am going back to get a follow-up with the neurologist next week:  I want to try to get as best a feel as I can for my new limits... But I realize that it will be up to me to set them.  

I tried as hard as I could to find out if exercise would slow the healing process for the ICAD, because I knew that, if this was the case, I could control that by not exercising.  I never could get an answer, but only heard that exercise, too soon, could cause an event like stroke or rupture.  Now that I am supposedly healed, something I hope will be confirmed by follow-up MRI with contrast, I will just test the waters a bit more as I go along.  

What concerns me is the eye pain, the focused headaches, and the ear tapping.  I wish I knew that this was something I just have to live with; or whether it is something that I can make go away, permanently, by being a couch potato.  Unfortunately, that is not a choice I want to make.

[bigangel]

Wow, see article on Washington Post online from July 7, 2009, re: ringing in ear and misdiagnosed ICAD! Don't know if medhelp will allow this link. I also posted it to the "Carotid Artery Dissection" group on Facebook. http://www.washingtonpost.com/wp-dyn/content/article/2009/07/06/AR2009070602919.html?hpid=sec-health

I found all pain went away with time, as collateral blood flow established itself fully. My V. surgeon said exercise helped enlarge, establish other vascular pathways by increasing demand for blood. Also, keep the routes you still have CLEAR.

Glad you are doing better.

[raschmitz19]

A little update on how things are progressing.  I had my follow-up MRA and it revealed that my artery was "healed."  By healed, I mean that blood flow was equal in both the affected artery and the other side.  Blood flow to my brain was good.  I still do feel some tightness in my neck and I get lightheaded more easily, especially if I lift any heavy weight.  

In terms of how exercise affected my recovery, I can't draw any conclusions across the board, but I will say that I healed (either in spite of or because of) my continued running.  Two weeks after my stroke, I was lucky to be physically able to still run and I did.  My sensation was affected, but my mobility was still good.  I ran a half-marathon at one month out and I continued to run 5 miles 4 times per week.  I did not feel any immediate worsening of symptoms after running; it actually had a very calming effect on me as it made me feel more normal and healthy (the rest of the healing time, I was a stressed out basket case!)  

I do think my CAD was due to some yoga stretching that I did after a long 16 mile run on a day that I was sick with some sinus issue.  Immediately after finishing my run, I felt terrible and unlike myself.  I had a stroke that night, possibly hastened by dehydration.  I now make a huge effort to stay hydrated at all times as this can be a mitigating factor of strokes, albeit not the solo cause.  I have also stayed away from any heavy lifting and neck stretching.  I am very shy about twisting my neck or having anyone touch my neck, but hopefully over time, I will ease up.....but not so much that I have a repeat!  Not sure what to make of my experience, but I am putting it out there in case anyone has a similar experience.  I can't say it enough that we are the best source of information on this relatively new or rare diagnosis, so the more info we put out there the better.  Maybe over time, we will start seeing the big picture of why some of us are more susceptible.  

[Mrgrita]

This is an update to my post of Feb 5, 2009.

I only had to stay on the blood thinners until April. The dissection caused by the angiogram had completely healed by then. I feel this occurred because I did not do anything more than long walks for 3 months. I made sure I ate well and monitored my blood pressure daily.

I still have the aneurysm and the doctor will continue to monitor it yearly, unless something happens. I did see a geneticist and although I do not have any documented type of collagen deficiency, they do feel I something that causes my arterial walls to be weaker than average.

I am back to lifting, but am very conscious of any neck pain, especially in the area of my carotid artery. I avoid bench presses, as I was told these seem to cause a spike in blood pressure – most likely decline presses – and my doctor has had 2 personal cases where the person had a stroke while doing these. I monitor my blood pressure daily and have added bike riding to my weight training routine. I eat a low sodium, low fat diet and just do my best to stay healthy.

[biff4431]

Wow,  

This is interesting to find this much discussion on a topic that is from what I understand pretty rare, and all of us have the same concerns and frustrations with the lack of information.

My dissection occured about 4-5 weeks ago overnight, I woke up with a headache that never went away, with 2 weeks it was severe enough and I felt like it was a sinus infection (having had those in the past), after further review and CT's, MRIs, the dissection was found in the internal area of my head and I was informed it is not operatable or correctable, so for another 10 days I suffer with the fear I am sure all of us have of will this be the end of me.  I had no stroke with my dissection and have we began all the same basic treatments everyone has had on here.  Steriods in case of inflamation (inflammation) (which I am being taken off of slowly now), and of course blood thinner (Warafin).  The frustrating this for me is the headache and very very deep neck pains come and go, I also suffer from tier three Horners syndrome (affects the eye and optic nerve of my right eye as my dissection was the right interior artery).  Everything I can find on line has been helpful as far as the hope that over time it will self correct (for lack of a term).  I will not have another CT to look for some time now and have been pretty much told you just have to go thru the time.  I have not even seen someone from Neuro science or surgery or vascular (they have looked and said nothing they can do type thinking).  Neuro science is meeting with me soon to advise and continue to monitor after some pushing from primary care giver and a Rhemetologist I was sent to in case of some blood disorder etc that was unseen.  

Guess the good news is over time I hope this heals, I have not slowed down on doing what I do for sports or working around the house etc, I am currently remodeling a bathroom, playing golf, going and doing this with the kids etc.  Hope over time like everyone else it seems on here that I continue to improve as I hate to say it but there does not seem to much other choice the old saying "what you cannot cure you must endure" is constantly on my mind.

Hope everyone continues to do well and feels better, cause if your head and neck and eye feel like mine, you know what I mean.

[hobs77]

Hi

Thank you everyone for posting your experiences on this forum, its been very comforting and encouraging to hear and learn from others who also have an ICAD.

I have a right ICAD that was diagnosed 7 Jan 09 after I suffered a TIA one morning. The vision in my right eye went crazy for a bit (it looked something like when you pressed your finger against and LCD screen and the image would get fuzzy and watery) and at the same time I felt this spread of liquid on the right side of the back of my head. Finally got to see a neurologist 2 days later who sent me for an MRI and confirmed a right ICAD with 100% occlusion. I was put on Plavix and Warfarin on day 1, but the next day the doc called to say i should discontinue Warfarin was a second MRI to zoom in on the area showed that the tear was quite high up.

I did my 2nd follow-up scan at 3 months and 6 months respectively. The one at 3 months showed very small flows returning to the artery, but the scan at 6 months showed almost no change from the 2nd scan.

Throughout this whole period, physically I've been feeling up and down. The first few months I had headaches, migraines, floaters in my eyes, sensitivity to light, also some slight numbness on my left. Emotionally I was also all over the place, I was getting panic attacks just worrying I was going to collapse with a stroke at any moment.

Faith and speaking to a therapist about 4 months into this, I started managing the panic attacks better and life almost went back to normal. Physically I started feeling better, almost as if I've gone back to my pre-dissection days.

But the 3rd scan brought everything back again when my neurologist noted there was no improvement. He didn't seem sure what to do, and after consulting with his vascular surgeon friend, advised that I should "just wait, sometimes these things take a year", as they decided based on the MRI that stenting wouldn't be a good option cos the dissection was too high, too long. A second opinion with a neurosurgeon confirmed that I should wait and there was not much i can do about this but wait.

But a friend then recommended a vascular surgeon at the university hospital here in Singapore, and he subsequently sent me to another neurologist who did a much wider spectrum of tests. They did an ultrasound doppler of the arteries to measure the blood flow going up to my brain. They also did a SPECT with Diamox which is also to further test brain activity under normal circumstances and when my system is stressed (by injecting a chemical) and this extrapolates how much oxygen my brain gets and how much my left side compensates under such situations.

It didn't come back too ideal, they say its ok while I'm still young, but if possible, they'd like to do a stent or explore surgery. So I've to go for a CT angiogram to confirm the location and length of the narrowing to see if this is operable.

Sorry for the length of my post, thanks again everyone for sharing. Hope everyone on this post is well, all the best and pls keep writing.

[MarneyW]

Interested to note that you are in London too, and I shall be seeking out the facebook group tomorrow.  I am 49 and female.  I had a stroke at the beginning of May, a result as the scan showed, of a CAD. I had thrombolysis for this as I had arrived at hospital with 3 hours but it is not without controvosy as there is a balance of benefit of clot busting offset against carotid dissection.  It was obviously the right decision in my case as I have made a full recovery from the stroke and the arterial flow is now good 4 months on.  I have just come off Warfarin and due to go onto aspirin.  Off to the GP tomorrow to discover if this would preclude me from thrombolysis in the future, and to see if I should have my hypermobile joints investigated as the likely cause as there was no obvious reason for the dissection otherwise.  I had neck pain on and off for about 6 weeks prior to the CAD.  It got worse and constant in the 4 days before stroke.  Despite the great outcome it has been an emotional rollercoaster, with little clusters of strange symptoms on and off over the last months.  I was active while the healing was going on,with some swimming, but avoided anything strenuous.  2 of my 3 children have hypermobile joints too so I am keen to ask about the future for me and them.  Neurologists everywhere admit there is little known about the cause or advice for behavior during healing.  For it to happen again is unusual but not unknown.

[debba47]

Sounds like we had very similar experiences with our ICAD, and very lucky that we did not have a stroke from it. I had three diagnoses over tow and a half weeks - sinus infection, viral inflammation, and possible temporal arteritis.  Like you, I presented with classic Horner's Syndrome with the exception of the eyelid and none of the medical practitioners I saw even made a connection.  The very good reason is because they didn't even know about Horner's or the symptoms of ICAD. I demanded an MRA/MRI and they found it.  Spent 6 days in the hospital and released on 9/16 with Coumadin to which I am still adjusting. For the most part the headaches are gone unless I inadvertently roll onto my right or left side while sleeping. I still have twinges and my eyes get tired quickly.

I had neurologists and vascular surgeons surrounding me, but for ICAD they are helpless. It takes an Interventional Radiologist for the type of surgery needed for this condition, and from what I understand it is risky and they are found only a major hospitals.  Although I am feeling better (the only symptom I notice regularly is the pulsatile tinnitis when I am tired), I am seeing one in Boston on the 12th of October. If the Coumadin does not do the job, I certainly want a plan B even if it's risky.

[nolester]

My update:  My ICAD was diagnosed in early February, details above.  In short: intracranial, inoperable, Horner's syndrome, headache, etc.

After three months of coumadin, I showed my doctor the article about a Swiss study and he also had a repeat scan that "showed" it had healed, and I was put on baby aspirin, instead.  I had another scan at six months, and it two showed it was "healed."  Unfortunately, in my view, each of the studies was a different method, as in MRA with contrast, MRI, and then CAT with contrast.  In any event, my MD seems satisfied.  

My opthamologist wrote my neurologist that maybe I should take blood pressure meds, even though my BP is normal.  But the neurologist disagrees.  So I am on no meds but the aspirin.

As for activity, the doctors either duck the question or tell me that the scans show me to be "good to go."  It is as if it is entirely up to me.

I still have an occasional full feeling in my head, and the pulsing comes sometimes.  My eye sometimes hurts.  I believe the Horner's is permanent, though maybe it is less than it was.  

Unfortunately, just as I am coming out of this, I have a tumorous saliva gland, excised a few days ago; and am awaiting the pathology report.  Oi vey.

[oliverrah]

I've posted before on this site...had a "classic" right side CAD in Feb with no stroke.  Follow-up CTA with contrast in May showed healing on the affected side - had been blocked, now open, healthy and healed.  My PCP wanted to keep me on Coumadin another few months and do one more CTA, which I just had, with bad news.  Now the left side shows not a dissection or blockage, but a problem which the vascular surgeon described as kind of a psuedo-anneurism but not really, some sort of a very small bulge on the inside of the artery.  I asked about stenting, but he said no - due to the looping of the artery in the area, the stent might twist and block. He also said (when I asked) that this is likely and indication that my carotid arteries are weaker are more susceptible to this type of problem, though not necessarily indicative of a Marfan or other syndrome.  Anyone have any info about this problem, i.e., both carotids?  By the way, my headaches and neck pain linger on, though not too bad, as does my Horner's.  Learning to live with it.

[Mr_ICAD]

I'll try to keep this concise and not subject everyone to a wall of words.  If you're anything like me, your eyes are probably fatigued already.

I'm a 32-yr old (previously healthy) male.  I suffered an ICAD on my right side last February.  It took 1.5 mo to diagnose, but an MRA finally revealed the CAD and it's pseudoaneurysm partner-in-crime.  Whoever first mentioned Interventional Radiology hit the bullseye.  I am fortunate enough to live in a city (Tampa, FL) where a local hospital has an excellent I.R. dept.  At first, the neurologists wanted to put me on a lovenox/warfarin combo, but the IR folks had different ideas.  Because of my pseudoaneurysm, they suggested a stent and coil procedure to address the issue.  This was done in April.  I then went on a Plavix/Pepcid regimen until my 3 mo follow-up in July.  Angiogram looked so good at the follow-up that they switched me to low-dose aspirin and said I could resume some light exercise.  I politely declined the exercise offer and let them know I'll wait for the results of my 6 mo angio.  My 6 mo angio is scheduled for tomorrow.

I still deal with headaches, eye fatigue and general paranoia.  I agree with the forum - this  is a frustrating affliction to endure when there is so little knowledge of true causality.  What's worse is that it seems to strike relatively young, active people with no prior health problems who are left with difficult decisions on how to adjust their lifestyles for fear of recurrence or stroke.  I want to resume my activities, but I also have a wife I want to grow old with.  Anyway, I'm glad this forum exists.  I don't talk about my CAD with anyone other than my wife and it's oddly comforting to know that there are others out there who have had similar experiences.  Cheers to us all.

[Melmom1]

I just turned 40 yrs old and in good health other than recently diagnosed with right side ICAD with pseudoaneurysm.  The vascular surgeon I was referred to told me the diagnosis after MRI/MRA and CTA then told me there was nothing that was going to be done.  He wants no follow up and has told me that the pain I get with exertion is not related.  He said I "can continue aspirin if I wish" otherwise he feels I am as "healed as Im going to be".  Im upset and frustrated that I am going to have to live with this defect the rest of my life.  He also stated that since I have 50 percent blood flow nothing would be done surgical wise.  He doesn't want any follow up because he said it would show the same thing and nothing would be done then either.  Has anyone else had this told to them?  

[bigangel]

Sorry your doc sounds flippant, but I've been told much the same thing. I beg to differ about the pain. For a year, I had pain or sensation in the general area of my dissection with exertion or dehydration. My doc said follow-up was needed on my GOOD arteries every five years (ultrasound), just to make sure that the healthy arteries were functioning normally, not getting clogged (i.e., not to look at the dissection) since I am now without a back-up carotid.

[Melmom1]

Thank you for getting  back to me, and I have read over your earlier comments again.  I went back to my general practitioner and he wants me to get a second opinion AND he explained much the same thing you did.  About the left carotid becoming my dominant one and how the Circle of Willis will change to make up for the deficient artery flow on the right side.  He didn't feel I should be having any pains or feeling faint with exertion, but I really feel its related and I feel that you acknowledged it for me and answered my questions about why the pains and the dizzy,faint feelings are there.  Thank you again.  

[marandag]

I am happy to have found this site. I am female and just turned 29 in Sept.  I had a baby August 21, 09 by a sceduled c-section (my beautiful healthy baby boy was breeched).  I actually went into labor the night before but waited to go to the hospital for my scheduled appointment.  After we were released from the hospital I started having bad headaches and neck pains.  I called my ob Dr. and they said it was normal and to take a hot bath and 4 motrin.  The headaches never got better.  In September I got really dizzy and started throwing up, it lasted less than an hour.  I called the same ob Dr. back and the nurse told me to see a GP.  I went the following day (Thursday Sept 24,09) everything came back ok, but the Dr. scheduled me for an MRI the next Monday.  I went in that Monday morning and was sent to the ER after that because the results showed a stroke.  I was in the hospital for a week while they took lots of blood, did x-rays, MRI, MRA, and CT with and without contrast, EKG, and ultrasounds.  I had a VAD (verebral artery dissection) in the neck on the left side.  My right side artery is very large and the left really small, the Dr. said I could have been born with them that way, he said some people have a dominant side.  They do not know when or why it happend, they think it might have been around the time of delivery.  I had so many Dr's coming in to see the 29 year old stroke patient with no symptoms and 2 Residents ask if they could write a report on me. They sent me home with Warfarin.  I had to go to a clinic every week until they could get me on the right dosage. I am now going every 3 weeks for a check up.  

I just had a follow up appointment with my nerologist.  He did not run any large test, just checked my BP, heart rate, and did a few small test (touch my nose then his finger, reflexes, hearing on both side, and follow his finger up,down, left and right)  He is having me go back March 1 for follow up CT and MRI's.  

I am scared, having a new baby and being married almost 2 years now I feel like my life is just getting started.  I worry about everything I do.  The Dr's told me I can do pretty much anything, no scuba diving,snorkeling, or heavy lifting.  I think every little thing I feel on my body especially around my head and neck is something more happening to me.  I have a follow up appointment with the Cardiologist on Nov. 19th.  I pray everything is getting better!  Good Luck to everyone and keep posting.

[tomle]

I had my dissection (50% blocked) in May of 08. Everything I've read here seems in line with my experiences -  follow this link to see my story and follow up.
  I had an aneurysm about 3 mounths after the dissection (did not stop exercising entirely) 7 hr opperation to put in a 6mm x 30mm long stent) 6 months later angiogram looked good - 1 year after  the dissection I raced a few times and had trouble on my right side and speech again. CTA showed 50% blockage! 6 weeks later after blood thinners an agiogram showed all was clear. I am back on Plavix and exercising again.  Please see link below     - Tomle

http://www.dailytriathlon.com/forum/topics/1412027:Topic:19015

[itcouldbeworse497]

I am a 46 yo male one week out of the hospital for ICAD (left carotid).  The day it was diagnosed on an MRA I was admitted to the hospital for heparin therapy with the subsequent start of maintainance Coumadin/warfarin.  I was being seen by a neurologist.  It took four days to get the Coumadin levels where he wanted.

Symptoms
Four weeks prior to the hospital I had been complaining of recurrent HA's that I typically awoke with.  They felt like sinus headaches with pain around the left eye along with scalp pain.  They would persist into the day no matter what pain releivers I took.  But largely they'd be gone in the late afternoons.  And they would come and go without rhyme or reason but usually in the morning upon waking.  I knew that was a bizarre symptom because headaches don't ususally arise during sleep.  The other prominent symptom was sinus pain and congestion.  The symptom that scared me and sent me to the doctor was my wife noticing I had differentially dialated pupils.  Finally, another symptom which was particularly irritating was FATIGUE.

Discharge Orders
So now released, I'm on Coumadin 5mg QD and two 81mg tablets (162 mg) aspirin QD.  Also, I am taking Fiorocet daily for HA pain.  It works for me after having tried ES Tylenol, then Darvocet, then Hydrocodone,  Aggrenox and Fiorocet, all while in the hospital.  Initially, none provided an ounce of relief to my HA.  In fact, the next to last thing we tried was the Aggrenox, a vasodialator,  which made my head start pounding.  So, he tried Fiorocet, an old migraine drug that only differs from plain Tylenol in that it has caffeine plus butalbital.  It works and I have no idea why.  My HA is still there if I stop taking the med though.  

Strangely, along with the med regimens above, my discharge instructions were quite different than any I've read above.  I was told that I could resume ALL my regular activities, i.e. weights, running, etc. as long as I wasn't doing some activity that clearly placed excess strain on my neck.  I was NOT told to refrain from heavy lifting, either.  Further, I was never told to monitor my blood pressure or heart rate after leaving the hospital, during exercise or at any other time.  I do anyway, and at rest my systolic varies in the 120-130s and my diastolic 70-80s.  I went running this past Tuesday and it felt normal during and after. I lifted weights on Thursday and felt fine.  The HA's are still present but can be managed withthe Fiorocet.  

I was told that the Coumadin will keep the dissection from getting worse and thus will also allow it to heal.  Without the blood collecting in the dissection, the body over time will remove the clotted material and the area will heal like a blister that is never popeed but allowed to shrink with the skin ultimately sticking back to the surface.  He said it could take anywhere from 6 months to 2 years to heal and would be verified with a MRA with contrast.  As such I can restart my previous avtivities now so long as I keep taking my Coumadin and my PT/INR times stay within range.

However, With Great Sadness
However, after reading ALL of your experiences above, I've concluded that I should stop everything for 6 months regardless of what the doctor told me.  With the exception of the few cases above, it seems the concensus is to "take it easy" for 3-6 months to indefinitely.  Well, I know I can't "take it easy" for the rest of my life while constantly worrying that something's going to blow. Without semi-regular exercise, I won't be able to climb a tree with my kids, carry suitcases without possible muscle injury, etc.  All typical man stuff like lifting and moving stuff when needed would be no longer allowed. If I don't exercise, I'll end up doing one of those pathetic manuevers of asking the neighbor's kid for help when moving something heavy.  To me, that's a death sentence.  I might as well check into an old folks home now to start playing bingo and telling the same stories/jokes over and over again.  

Like the guy said above, I could "take it easy" if I knew that it helps the healing and like with other injuries, once completed healed I can go back to my regular life, perhaps with slight more caution though.   So for now, I have dropped everything for 6 months, except for maybe walking but I doubt I'll do much of that because it's not challenging enough.  I vasilate between anger, frustration and depression.  The end.

[nolester]

Hang in there buddy.  This, too, shall pass.  

I did nothing until a three-month CAT scan with contrast.  Then, at maybe four or five months, I began walking; and yes, it seemed kind of boring and it saddened me that it was not running . . . .

I did feel and hear the odd pulsing, like an artery spasm that felt like a gentle tap on my outer ear, sometimes.  Over time, that diminished.  

I then would jog a bit and worked up to 1/3rd mile jog in a one mile walk.  After six months, my CAT scan looked healed.  

Now, after ten months, nearly eleven, I am a bit sore today from a five K race and I am entered in a ten K Turkey Trot tomorrow.  I don't sprint in these things, sadly, but I am getting faster and stronger. And I am loosing some of the weight I gained. (Be sure to change your diet while inactive:  Make that your "exercise," read "In Defense Of Food" instead of going on a run).  

Now, I never get the odd noise in my ear.  And I know my arteries are improving through exercise.

I have a subtly drooping eye lid, but it is improved.  A rare appearance of "the" headache, but only momentary.  It happened once during a race, when I turned my head quickly to look over my shoulder; but it was gone in an instant.  

So, just hang in there:  You have a lot of life to go!  

PS:  After three months, you should ask for a repeat scan.  If it turns out to show healing, I would show them the above cited article comparing aspirin with coumadin.  

Good luck!  And remember, life itself is a terminal condition!

[nolester]

Let me add one more thing:  There is a link up above to a facebook group.  I am on facebook dating back to when I re-enrolled at a local university to take some scuba classes several years ago; and as a result I had a lot of younger friends on there who were all divers.

When I went to the ICAD facebook group, which is literally international and had, then, only forty members, lo and behold there was a fella in it who shared "mutual friends" with me and who was in my town.  I messaged him, and he replied that he had met me at a party a year earlier.  (I am remembered because I am so old!)  

So, I met him for lunch to compare notes.   He is nearing age thirty, had an ICAD two years ago, with ten days in the hospital and Horner's, etc.  It did my soul wonders to meet him for lunch, regularly, for a while; and we are still friends.  It was someone who had survived.  We counseled each other, knowing we could vent.  Venting is a good thing.  

The end.

[Melmom1]

I have gotten my second opinion from 2 other vascular surgeons.  They confirmed the right side Internal Carotid Artery dissection with pseudoaneurysm. Located at the base of my skull just before entering the brain so it is extracranial and they agree its a short segment.  They, however, want to approach it in a different way than the first surgeon.  They seem to believe it will heal!  The first surgeon told me I was as good as I was going to be, so this is better news for me!  They have placed me on a combination Plavix/Aspirin and asked me to "take it easy" for about 6 months until they can obtain another CT scan with contrast.  Neither one could confirm or deny that the pain upon exertion and the head pressure along with dizziness is related to the dissection, however I still believe it is.  Also they either couldn't or wouldn't confirm or deny that it was caused from Chiropractic manipulation.  Again I believe it was, since the burning/excruciating pain occured 5 days after the manipulation, then the symptoms of dizziness,head pressure and neck pain started and continued on.  I suppose it really doesn't matter what caused it, just that I am getting a more positive diagnosis now!  I am still walking daily and doing light lifting (if you can really call lifting light) but I am taking it way easier than I would normally, because the surgeons said they were concerned about a blot clot forming and then breaking free.  I also fear any possibility of a stroke!  I have seen some family and a couple friends attempt to recover from a stroke and frankly that scares me more than dying from it.  I am also very thankful for this website, I don't have Facebook on account of trying to keep my young teen daughter away from it, so I can not access that forum.  Thank you

[nolester]

Good news Melmom1.  It all rings true.  Trust that it will heal and that you will have perhaps a bit of residual symptoms but maybe not.  Do take it easy, but know you will build back up.

It almost certainly was chiropractic manipulation, and known cause of these.  At least you know what caused it!  

Best wishes.  Keep us posted, as others learn from here.  We all do and did.