[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?

[unrouley1]

welcome lizajane! yikes! it sounds like you have been thru the wringer. unfortunately, i don't know anything about any of your issues. my RSD began after shoulder surgery and the sympathetic nerve block was the determining factor because the pain was gone immediately following. i have had relief from my blocks (6 so far) as well as a combination of meds: methadone, gabapentin, norco & amitriptyline. from your post, it doesn't necessarily sound like RSD. i don't think RSD pain is triggered by movement - it is there all the time. my arm felt like someone was burning me with a torch and it was constant. there was no relief. i'm just going by what you said about moving your hip and THEN it hurt like lightning...

have you discussed RSD with any of your docs or are you meeting with your neurologist to discuss it?

good luck with your appointment. i hope that it isn't RSD and that you find out what exactly it is.

shalom,
angie

[Desi]

Hi Liza Jane!! Welcome!! My RSD started after carpal tunnal surgery and the pain in my wrist, and hand is constant. I also have a cold right hand all the time and it changes in color from red to blue. Now, this shoulder problem I am having hurts only when I reach up comb my hair dress to put a top on.. and the pain feels like you described, lightning. It hutrts like all heck!! I am going to Cleveland clinic to see another nero surgeon for this. Also I had a MRI,& bone scan and I have a herniated disk. I requested all these tests, as my ortho surgeon said it is all caused by your RSD. I had a gut feeling something else was going on with my shoulder, so I kept bugging the dude.. LOL And he finally ordered these tests on Tues. I got a call from him and .. here he found the herniated disk, severe irritation in my right wrist and something called atrophy which older people get!! totally freeked me out!! he said the herniated disk might cause this?? I'm just sick and tired of me having to push these Dr's. to run tests on me, but on a good note, if I had not.. I would NEVER know about my neck and the atrophy(in my brain scan, he took) I can't find any info on atrophy?? if someone has any info on this, can you please P.M. me.. TIA Love, Desi