Hi K*L*D,

Thanks for the link.

The deficits I have from the stroke are on the left side, from the under arm area to my toes and the trunk, numbness, severe pain, and weakness in my leg. The weakness varies, and can be affected by how much I use it, or can be affected even when not used much. The pain can also vary in degree, and is affected greatly by things like being touched by clothing, bedding, a shoe on my left foot, sitting, being touched by people hugging me, activity, etc.

It also altered my ability to feel heat and cold on the left side. Hot feels luke warm, and cold is very painful.

The surgery to embolize the AVM and aneurysm made the deficits on the left side caused by the AVM rupture ( resulting and stroke) to become worse, and also caused the right side of my trunk to go numb. Fortunately I don't have the pain on the right side that I do on the left, or the altered ability to feel heat and cold.

So other than the weakness, there is not any paralysis, per se. Otherwise, I hope I answered your question.

It sounds like your stroke was not as severe as many who end up completely paralyzed. It sounds like your pattern of deficit is like a Brown Sequard incomplete syndrome. What are you doing for the neuropathic pain? Are you seeing a physiatrist who specializes in SCI?

< physiatrist > ?

Yes, I realize I have been fortunate in not having been paralyzed. I've heard of the BS syndrome, but have not been dx with it.

Right now I am taking Topamax and Cymbalta for pain, with some good results. I've been taking the Topamax for a year. I have been on Neurontin, with very bad side effects, Tegretol, which did not help, and was prescribed Depakote but decided not to take it because of possible side effects.

Treating the pain is a never ending ordeal - there doesn't seem to be much that my PCP and neurologist are aware of that is truly effective.

A physiatrist is a physician who specializes and is board certified in physical medicine and rehabilitation (PM&R). Some are also board certified in spinal cord medicine. A consultation could be helpful.

Have you tried Lyrica for your neuropathic pain? TENS?

hey, i have an avm aneurysm in my c2/3 it ruptured Dec 28th 2005. i walked into the ER with a massive headach where i collapsed before i could be admitted. At first it paralyzed me from my jaw bone down. I spent 2 weeks in the ICU at UCLA, there i had a laminectomy of c2-6. The avm is inside my spinal cord and there were not able to embolize it. I did rehab in san diego and am home. I had radiation therapy in July to cause the blood vessels to close. the past year and a half have been rough, my husband and i recently got married (AUGUST 2006) he has been so wonderful to me, been my strenght through this ordeal. i was a senior nursing student at the time of my injury, i am back at school finishing up. will have my BSN in may. i am walking again with a cane. still have bladder issues which are frustrating, its hard to have an injury at anytime, and at 23 its really bad. I was planning my wedding, finishing up college, ready for my life to start and then my life got thrown a loop. things are working out but its still tough. a part of me feels guilty for making my husband go through this. he is only 24 and i dont want him to have to deal with a disabled wife at such a young age. he is so amazing and is my rock. i just wish that i could help him.
sorry i kinda rambled but its nice to hear others out there.