It's real and it has a name!

Since I will once again deliver myself into the maw of a new medical subspecialty on Friday--the "Pain Clinic,"-- I decided to do some internet investigation last night.

The pain that I have been experiencing is so bizarre, so different from any pain I've felt before in my life, I was beginning to doubt that it was real. Perhaps it was all in my head, I thought. Like the weird phantom sensations from the breasts that were no longer there, right after the surgery last year. Both my oncologist and reconstructive surgeon seemed impatient with my reports of searing, burning waves of agony that made me cry out or drove me to my knees without warning. Ho-hum, they seemed to say. Talk to the other guy, not my department.

But I found it, and it's a real pain "syndrome." It's called Post-Traumatic Neuropathy, and involves either nerve injury at the time of surgery, or more likely in my case (because it started a full year after my surgery), constriction of nerves from that other side-effect they neglected to tell me about, over-active scar tissue.

The literature describes the pain of this condition perfectly: An exquisite sensation of severe stabbing and/or burning at the scar site. Light touch on the skin at the affected site is perceived as unbearable. In some people, superficial skin nerves become entrapped in scar tissue during the healing process.

And it also explained why the chiropractic adjustments in Washington provided some temporary relief: In some cases, adjustment or manipulation of the underlying bones and muscles may give affected nerves space to relax the constriction in the short term.

This whole experience with my continuing problems with the reconstruction has left me feeling a bit guilty. I am the Iron Maiden. I've flunked Bionic Boob Recovery. I am "one of those patients" who has trouble with encapsulation, scar tissue that over-compensates. Lucky me.

What I have been doing (Bio-Freeze topical ointment, cold packs, deep breathing), are some of the recommended treatments. But there are thankfully other options as well. Right now, I am back to life without movement, life without the use of my right arm, and this can't continue. I had hoped to get through 2009 without more surgery, but that may be my ultimate solution. I may be "one of those patients" who has to have annual housekeeping operations to clean out the scar tissue.