Re: [QUAD-L] Pain and AD

[TheOmen723]

Gabe's Mom,       i know exactly what he is going through.  i had the same problem for a number of years.  serious pain (in my hips, back, tailbone), dysreflexia, horrible spasms.  i really thought i was going to die and everyone that came around me just felt bad because no one could help. i was always taking pain pills.  i also tried the baclofen pump, with poor results and numerous hospital stays trying to find out why it wasn't doing what it is supposed to do.  i only had the pump for a couple of years and i had to have a lot of surgeries.  (die studies, re-gluing, pump changing)  i also found the pump area would hurt to the touch.  after i had the pump removed spinal fluid kept leaking out of my back through the stitches for about a week.      what level is your son?  how long has it been since his accident?  is he incomplete or complete?  what kind of wheelchair does he have?  does it tilt?  What kind of cushion?  does he have a pressure sore? answer these questions and I'll see if i can come up with some ideas.      i rarely have pain anymore but i still get dysreflexia sometimes and i've found that if i drink plenty of water, more than what i'm thirsty for sometimes, that i don't get dysreflexia as much.    luke c-5/6 incomplete, 5yrs post, got hurt when i was 17 riding a dirtbike   In a message dated 8/16/2005 9:00:10 PM Central Standard Time, [EMAIL PROTECTED] writes: I have posted several times about Gabe, my son and a problem that he is having with autonomic dysreflexia (AD) and pain.  It started with AD in the late afternoon and some bladder and bowel spasms would follow. The Ad would resolve when he would lay down.  Now he has serious pain. We have been to all the doc’s. The urologist says he has two kidney stones. One in each kidney. She thinks they are to small to cause the problem, but says it’s possible. Neurosurgeon says his shunts are ok and he does not think anything in the spine could cause this. The abdominal ct shows a small gall stone in the neck of the gall bladder. The surgeon doubts it’s the cause.   So I started thinking about when was the last time Gabe had pain like this. It was before he got his baclofen pump and the central cord pain, skin pain and spasms about killed him.  He got a new pump last summer and almost died from an allergic reaction to an antibiotic. So he went two months last summer without his pump when he was in the hospital. He was drugged on morphine for most of the time. He was too ill from the allergic reaction to replace the pump. So his baclofen pump dose now is a lot lower then it was before last summer.   So the question is…. could the pain that is going on now be central cord pain and the AD be a response to the central cord pain.   I’ve made an apt for him to see his rehab doc. Until then I’m going to give him oral baclofen everyday as an experiment.   What do you guys think? I’m asking you guys because Gabe can’t tell me everything that’s going on.  When it comes to this problem he can just tell me about the pain.   Help!   Gabe’s mom