Hello, my name is Charlene and I suffered a traumatic brachial plexus syndrome injury with complete avulsion of C3,4,6,7 & T1,&T2. I was only 20 years old then & am now 57. My C5 was barely intact, but when tested got a 5% response, so they decided to delay an amputation of my R arm to see what they could get C5 to do. They also harvested my R psural nerve from my R leg & did a nerve transplant on my musculocutaneous nerve to bolster C5 & a resulting biceps function. They plated my compound fractured clavicle. I also had skin harvested from my R thigh to cover my extremely decided R forearm. I was a MESS for quite a while, but slowly healed & 3 years later after a ton of PT, was sent to Utah, had an above elbow amputation & started getting fit for a "Utah arm" prosthetic. I started out in terrible phantom pain, but through Lamaze breathing & getting on with life, I went several years without terrible pain. I still had phantom limb feeling & pins & needles sensation all the time, & a bit of pain, but I was able to manage it without meds. As the years went on though, I have had increasing pain to the point where I am beginning to be terribly disabled by it. I have noticed every time my body changes position, it fires off an excruciating pain that almost feels like a crushing of my fingers, followed by a horrible cramp that feels like the worst Charlie horse you've ever experienced!! This of course causes me to tense up, prolonging the cramps sensation a LOT longer. This horrible pain has been going on now for over 10 years & my many doctors have tried every therapy they know of. Nothing seems to work. I have been to the Mayo Clinic in Rochester, MN & was seeing a Dr. Lee & they had even scheduled me for surgery on my brain. I received a phone call later, that it had been canceled due to one of the team's doctors was killed suddenly & they would have to let me know when they could reschedule. I have checked back for several years now, and none of their facilities seem to be performing this particular surgery for phantom pain relief. They are however performing a very similar procedure on Parkinson's patients & essential tremor patients. It is INCREDIBLY frustrating to know that my relief of constant, debilitating pain was within my grasp, but because my diagnosis is different than others, that my surgery will not be performed. I just don't know what's next. I would LOVE to retire, but without this surgery, I think the lack of work & keeping my mind off the pain would be awful! Not sure what to do. I've been in horrible pain for so long, I can't imagine what life would be without it. For now it seems to be a very far off dream.