Hello All,
Just spoke with a man at my last physical therapy appointment. He has been in a chair for 27 years. T6 complete injury. When he asked how I have been doing, I explained all about how I have been battling with this neuro pain, central pain, or whatever you may call it. He replied that he battled with it for 20 years. For most of those years noone knew what he had or how to deal with it. His pain in many ways was identical to what I have been dealing with. Ex. (burning, freezing, squeezing, etc.......) He said that in 1996 he found a doctor(actually a clinic) in Boulder, Colorado. His insurance flew him there after receiving a referral from a neurologist here in PA. He spent 2 weeks there during which he underwent a slew of tests which he said were designed to pinpoint the exact nerve locations causing his pain. Once found he said he underwent surgery which was pinpointed at those nerves. He said the surgery was very tolerable and quick. He spent another week in there rehab recouping and performing therapy. He was flown back home and for the last 10 years has not had any neuro pain at all! He said their success rates are 90% He is going to be giving me more info. on the doctors clinic ( his name is Dr Falci ) and the surgery that was performed. He said that being as though it was 10 years ago he figures that more doctors are in tune to this and there are probably more advancements.
This is the first good news I have heard regarding success stories with this type of pain. I have known this man for a while and trust what he says. I just wanted to post this as it seems to be a ray of light in an otherwise dark world regarding this pain. I hope to hear more from him this week and will post more info when I learn more. He also said there is a neurosurgeon in Pittsburgh here where I live that now handles this type of pain as well. I am going to check into this as well. Hope to post more good news in the near future.
Take care all!

I would like to find out more about that neuro pain treatment, my husband had a bike accident nearly 2 years ago,(a silly *#$@ swerved onto the wrong side of the rode and hit him head on) he had an unstable fracture of the C2 which the Docs fused, fractured C7, T1, open book fracture of the pelvis and also badly fractured his sacrum.his pelvis and lower back and sacrum have been majorly fused. So I spose he is lucky to be only an incomplete para after all that. Every Doctor that see's him says he's lucky to be alive let alone mobile (he uses crutches), which adds a whole other problem as he also severly fractured and dislocated both wrists, the pain in his wrists is agrevated by using the crutches. He lives in constant pain going from bad to worse, mainly nerve pain in his lower back and left leg, but has a lot of other aches and pains to. My husband is getting sick of being doped to the eyeballs on medication to try and control the pain. As we live in North Queensland the humidity really stirs things up to.
The Doctors are talking about inserting a spinal stimulator to see if it would help.
As we have 4 kids aged from 8yr, 6 yr and the twins will be 4 in a couple of months, we are really worried about possible complications. But then again he would like to be able to play with the kids, rather than just sit and watch, his pain limits him in most things.
I would love to hear how others have delt with the nerve pain.

I'm thinking of going for the surgery i think its called Spinal Cord Stimulation surgery

I met with Dr Falci in December for the surgery. In reviewing my MRI he described to me a procedure to remove the scar tissue from the dura at the sight of injury. It is referred to as a tethered spinal cord. There is some really good information on the Criag Hospital website, about the procedures Dr Falci performs. Dr Falci is at Craig Hospital in Colorado. He said he has completed over 800 surgeries and has better than 90% sucess rate. After considering my options, I have decided to go for this surgery. I am not sure when, as I am on a waiting list. I will be sure to post my progress after the surgery.