[LizaJane]

Hi--I've been a regular on the peripheral neuropathy board for many years now, and a sojourner on the spinal disorder board because I had a laminectomy and fusion a year ago, and now....I'm here.

I think I belong here. I think I have early RSD. Since fusion last February, I've had increasing pain which began in my left buttock, but now is the entire leg with just small, I mean TINY movements of my hip. I could move my hip and feel like lightening struck the entire leg. The butt has become very sensitive to touch. If I bend a bit from my low back, liek leaning forward over the computer, sometimes I get a pain that engulfs my entire torso. These are frightening pains, way beyond what I'd ever expect to feel from anything I know.

The doctors are talking about re-doing the surgery, because the fusion never fused, but I'm thinking the pain is not from the non-fusion but from RSD.

I had HLA typing done for the peripheral neuropathy, and it turned up the HLA marker for CRPS, which is apparently autoimmune.

I'm taking oxycodone, 25 - 20 mg at night, nothing during the day. I had a nerve block months ago which helped a bit, not enough, and lasted a few weeks. The doctor proposed doing a RFA, radiofrequency ablation, but it scared me. I went to Mayo Clinic and asked them two things: were the loose screws from the fusion dangerous, and was RFA a good choice. They didn't like the RFA in someone who's had surgery, but did think I could live with the loose screws without damaging my spine. However, they thought it likely that the loose screws were pain generators.

They probably are, but I think it all may have a life of its own now.

I have an appt with my neurologist for this week to discuss this with him. I have an appt iwth my spine surgeon, even though I do not want to have any major surgery at this point. There's a pain guy that does a lot of needle things who works with my neuro; I haven't gone back to him because he'd recommend RFA. Maybe I should?

Anyway, I'm reading some of the literature linked in your stickies, but would love to hear from anyone who can tell me what would be a good course of treatment to be hearing from my neuro? How would they wish they'd proceeded when it first happened?

I think this is really early RSD, if that's it, because I do not have all the sympathetic changes described. Although I do get patches of heat on my skin.

So, here I am....

Oh, I almost forgot--early on after surgery I developed severe myoclonus. My neuro figured that it was the oxycontin and I stopped it and it got better. However, over the past few days, it's come back. When I lie down and relax, I get myoclonic movements anywhere and everywhere. They are not one right after the other--maybe every few minutes. An arm, then a leg, then maybe my head tilts, then maybe a foot taps, or a knee bends. It seems to include both sides of my body and my head. I read already that movement disorders happen with RSD. Does this sound like one of them?