Constant pain that never goes away-Spinal AVM

[gigglemouth]

Hi,
My name is JR, I am fourty-six years old, live in Florida and I have a Spinal AVM inside and outside the spinal cord from base of skull C2 to t2. The pain NEVER goes away, it is 24/7. Had a resection in 1999 but the AVM could not be completely removed as I would have been paralyzed from neck down and not able to breath on my own. The pain is in the neck/back of head, and upper back. It feels like three heavy telephone books are sitting on top of my head. The past several years the pain started in the entire right arm all the way down to the hand and fingers. Also, right side of chest. Have bad weakness in right arm and hand-drop things all the time. Does anyone have same problems and AVM in same area? It would be nice to correspond with others in the same boat. Curious if others also lack energy and tired a lot of time. Hope to hear from others going through the same, although wish nobody would have to go through this.
JR

[RON]

hi jr im ron from north wales united kingdom about five thousand miles from you im 63 years old i had an opp for an avm on the spine in 2003 i was paralized from the waist down i get a lot of pain in my hips and knees and my legs sting inside and my head is allways bizzing dead loud and thats twenty four seven its 1 30 am here now and iv just woke up in pain i cant stand or walk no control over bladder or bowels im the one thats a couple of threads under you iwas in orlndo florida in about the year 2000 for a fortnight on a christmas and that year it was frosty hope to hear from you ron

[AVMowner]

Hi JR.
I am the same age. I hope you have had a second opinion if not get one, get two.. Never give up.Don't live with 2 much pain get the right medication to help. I have a post with more info. Please read. My AVM is lower, however I know about the pain. There are new developments all the time.Keep the hope. I am always looking for new info. I will share what I find.
Talk soon.
Avmowner.