Not working and not moving are two different things. It's only because I worry, you pepper freak, that I ask the hard questions. The greater the dysfunction, the more worrisome that you'll end up one of the extreme cases. And as difficult as my RSD can seem, I am well aware that it is a walk in the picnic compared to those that end up needing eventual amputation. (Not that I wouldn't be happy without my arm if the rest of my health would return, but since that doesn't work...)

Jimbo -

At the risk of putting too fine a point on this, the choice may ultimately become one of working with a really good PT in re-mobilizing your hand (I would suggest someone with one of those new post-grad 4-year DPT degrees: I learned their knowledge of neuro-anatomy is incomparable) or being in a position one day of seriously contemplating amputation, where there are significant rates of phantom pain and/or spread of the CRPS to the stump.

I hate being so blunt, but don't see any way around it. I'm sorry.

Mike

Mike,
I'm not excited about the amputation idea but I'm not too clear about how to get finger nerves that are not getting any signals from my brain to work. If it wasn't for the pain I could move them with my other hand but not on their own. Short of finding where the right nerves are located and, for lack of a better term, hot wire them PT won't do anything...

Jimbo -

Just out of curiosity, have you tried any "nerve gliding" work to free up nerves which have themselves become constricted through years of immobilization?

I know for me it made a tremendous difference in relieving late afternoon and early evening spasms in my legs, that had become intractable to anything but Marinol, the exact replica of the Delta-9 THC molecule from marijuana which we discussed some time ago: stuff that had so many side-effects that it wasn't worth the candle. But after years of bad results in PT - now a long time back - I was persuaded to return with people who knew what they were doing, and it had a fantastic result. It didn't do much of anything for the primary pain in my feet, mind you, but getting rid of maybe 60% of the leg spasms was huge!

So if I learned anything, it was a variation on an old theme, never say never.

Mike

My friends,
I know you all worry about me and talk about things to help and please believe me I truly appreciate it greatly.
What you don't know is that I believe the surgery I first had due to my accident was not completed without mishap. I never regained total control of my arm like straightening all the way or the feeling of burning.

It was explained to me that in order to place the rod inside my bones they started at the front of my shoulder, pushed all the muscles and nerves out of the way, drilled out the marrow down to the elbow and dropped the rod thru then cut thru my elbow to connect the rod to my elbow.
I don't know about you but that sounds on the side of yukkiness to me.

I had a balance problem ever since the accident too. Later I was told this was contributed to my head trauma, which FYI, it was so deep and bleeding so much that the EMT stapled my head to stop it. When I arrived at the hospital they removed the staples and sewed me up.

It was not until my neurologist had a CAT Scan done that my atrophy was discovered. She also performed all the conduction and block tests and it was determined that the atrophy and the involved nerves meet at the point where my spine enters the brain cerebellum area.
Since drilling into my head isn't going to happen, treatment for the pain and staying off of my feet is the only option left.

Sorry to go on and on but that's the whole scoop...

Jimbo,
2 things. Try L-arginine over the counter vitamin. It was highly recommended by a plastic surgeon I worked with who did nerve releases in both hands and feet.
2- consider a nerve release if you have to have another surgery. I don't personally recommend anymore braces. It keeps the arm and hand from moving, those your brain learns to deal without them and they start to dye.

Just suggestions.

Alt,
Everyone's concern and suggestions are very much appreciated. Don't ever think that I dismiss them.

I am trying to make everyone aware of is that the brace doesn't restrict movement. There is no movement. I figure I might as well protect what I got.

Are you familiar with Bell's Palsy? That's how the left side of my face feels. My mouth and eye lid are drooping and the left side of my face feels saggy and kinda numb. The burning pain is now from my left foot up to my thigh and even my hips ache. I don't think a brace at this point is anything to worry about.

I had some stress yesterday that started a flare up that even an extra Lyrica didn't help. It's very demeaning to just sit in this wheelchair and cry.

Sorry for getting carried away again. This family we have means a lot...

Jimbo,
I know what Bell's Palsy is, it likes to miminic a stroke 99% of the time. I know how your feeling, esp. with the cold coming. Both top's of my feet are burning and I am frustrated with the shoes I have, all of which touch the tops. My slippers feel the best, but even those and my socks and pants hurt.My ankles also burn, while my knees, back and arms just ache.I know that this maybe the winter, I to end up in a chair. But I try not to think about it. My husband loves me I know, but he still doesn't get it. This is a very scary disease. But I know GOD is fighting the monster and he will win, the battle.