Carotid Dissection, will life ever return to normal?

[jharrah]

I was recently diagnosed with an inoperable spontaneous intracranial cartoid dissection.  I have a clot behind the dissection that makes it touch and go for an infarction.  I see a neurologist, cardiologist, and a pain management specialist.  This condition is very painful, with an extreme constant headache behind the eye and running over the top of the head to the back of the neck.  I have been plagued with migraines for most of my life, but this headache is different in that it is very localized.  This type of headache is just as painful as a migraine, but this headache won't go away.  Unfortunately, I have found no relief from any type of drug therapy.  The only drugs that dull the headache make me concerned about addiction, so therefore I hesitate to take them (demerol, percocet, fioricet, neurontin, etc.).  My vision has been damaged, the left side of my face is numb, I am unable to taste, swallowing is difficult, I get this funny beat in my ears, my fingers tingle, my hair is falling out, my memory has been compromised, and focusing/concentrating is almost impossible.  I am a 40yr old woman with a husband and two kids who feels so diabled.

I have two questions.
1.  Will my senses return to normal after this has healed?

2.  Is there anything that will take away the pain?   I am open to any ideas.

Thanks for your help

[jharrah]

Thank you so much for your comments!!!  I did take coumadin, but now i am on aspirin.  I am 5'9" and the last time I weighed, last week, I was 148lbs.  My blood pressure is normal, 120/70,  until I have pain.  The highest I have seen is 196/135, so I'm not sure if I get pain when the blood pressure rises or my blood pressure rises when I'm in pain?  Cholesterol is under  200.  I would consider myself healthy except for the carotid dissection.  Before the CD I was very athletic.

I don't know what caused this?  I haven't had any head injuries or traumatic events before or since this has happened.  I did, however, have a grandmother that died at 40 years old of a pulmonary embolism (in 1956).  Maybe it's heriditary, I don't know?

I also have a very sore head.  It is very diffucult at times just to brush my hair.  I have threatened my husband that I am going to cut it all off.  lol.   I am still holding out hope that the pain will eventually go away before my hair would fully return to its original length, if I cut it.  I do have longer hair.  Vanity and the pain of putting my hair in the stylist sink prevent me from getting it cut anyway.  

I can't imagine trying to work with this!!!  I am lucky that I am a stay at home mom, but it is even hard to be that sometimes.  Your husband is a real trooper if he can work with this kind of headache!!  It's hard enough just to function as an individual.

From the last CTA I had last week the blockage is down to 20% - thank goodness, but the clot still remains and so do the headaches.  They did tell me that I didn't have any plaque in my arteries, which is a good thing.

I have heard of botox helping the pain.  I have a friend that had an anureysm last year that had botox and she said that it helped tremendously.  I have been looking for a doctor that will perform the procedure but I haven't found anyone I feel confident with yet.

My neurologist isn't helping ease the tension as much as my cardiologist and pain management specialist.  I love my cardiologist!!  He always calls me right away and answers any and all questions.

What I have found that helps:
1.  massage the area like you said.  Sounds wierd but it does help.
2.  Pain meds.  I am now on oxycontin and fentora (for breakthrough pain).  I have a wonderful pharmacist that explained exactly what you said -"if you are in pain you won't become addicted."  I can function through life now I am on the meds.  I know the headache is there, but it is more pressure than pain, and believe me, I know when the medication has worn off.
3.  Rest, rest, and more rest!!  The more excercise, the worse the headache.  This is the hardest thing because I was so active before this happened.

You are absolutely right when it comes to someone understanding the pain.  My pain management dr described it to me the best.  He said that there are many, many nerves in your arteries and that a dissection is like pulling your muscle away from your bone, or pulling your skin away from your muscle.   He also says it can take a very long time to heal, just like an athlete.  The cardiologist also explained that it could take up to a year to heal a dissection, especially since mine is only down to 20% after 5 months.

My left eye is also an issue, it is a little lazy.  My eyebrow also gives me trouble.  I can't lift it all the way up like the other one, therefore I always seem to look like I have a question mark on my face.   lol.

Mary, I really appreciate your help!!  Finally someone that has some answers.   It does take someone who has been through this to fully understand.

[Lee Kirksey, MD]

PS a blood vessel usually takes 6-8 wks to remodel before the inflammation associated withe the injury begins to subside. So 2-3 months is the time period one would expect to see some improvement. Improvement can continue for up to a year after that.

[Lee Kirksey, MD]

Hello
Congratulations to you for persevering through a difficult time. It sounds very challenging. Where were you evaluated for this problem? Did you seek a second opinion? I say that not to suggest that anything should have or should be done differently, but because you have a unique, challenging problem that is not run of the mill and in those cases I think it is best to have "another set of eyes" evaluate the problem and also to be under the care of the team that takes care of the greatest number of these problems in  your area.

You didnt mention when exactly this happened, what symptoms you had then (the same or worse), any prior similar symptoms. What your blood pressure is now and what is was before. What your other comorbidities like cholesterol, smoking,weight are?

It is impossible for me to tell you if your symptoms would improve. As you know, you have had many lab, xray test, mri's which all provide valuable information in terms of determining your prognosis for recovery.

The fact that you had pre-existing migraines is probably not a good sign.
However the body has a miraculous way of improving thank goodness and I suspect that your symptoms should improve.

A couple thoughts, have you considered accupuncture or even seeing a pain management specialist. Im sure there is some degree of stress contributing to this give the severe discomfort and family obligations that exist.

Good luck and God Bless

[mmgallivan]

oops I meant Jharrah not Lee Kirksey, sorry every one I am new to this .  Mary G.

[mmgallivan]

I had a carotid dissection when I was 40yrs. old as well ( I am now 47) scared the hell out of me.  I hope that your neurologist is helping to ease your fears by telling you that 1) that most people who will have a significant event will have had one in the first 24-48 hours and if you have gone beyond that it is a GOOD sign.  2) history of migraine is not nesesarily a predictor, although I get them too. (along w/millions of other women).  3) if you are not taking anti-coagulants you should be, they helped me with the pain; by thinning the blood and causing less friction on the artery.  also lessening the chance of a clot slipping through and getting caught in the channel.  4) eventually botox worked to kill the leftover pain on my trigeminal nerve.  your numbness  (horners syndrome) should (maybe not?) get better w/time, which by the way is your best friend.  give your self plenty of rest.  massage your face gently on the side with the numbness excersize it w/ your hands (I called it pt for my face) I think it worked.  anyway, everything came back.  only a little bit when blinking my eye and only I can tell.  I fired my first neurologist.  He had no comprehension of how scared I was, or how much pain I was in.  Find someone who understands.  Use pain meds if you need them, studies show that IF YOU ARE IN PAIN YOU WILL NOT BECOME ADDICTED.  I never did. I do know people who abused so there is a real danger. I f you  are not in pain.  I hope this helps Mary G.

[eloise1]

My husband had a carotoid disection about 2 months ago he is on warfarin but is getting very bad headaches and he complains of a sore head. have you any ideas what he could do about this.

He has gone back to work and I am wondering if it is to much to soon he is 49 and used to be a smoker but has stopped since this occured.

Ann Cooper
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