Hi Kasparov, and welcome to the family. I'm glad you found us. The people here are really wonderful and supportive, and I see you've already met the wonderful Laura. She's got so much knowledge on what you're asking about
Like you and Laura, I also suffer with CRPS (also known as RSD), and have dealt with it for a number of years now. Mine also started as a result of a work injury, tendonitis in my right (dominant) arm, but it never got better; infact the pain only got worse. Unfortunately while I do not have the same location, I can perhaps give you a bit more information on the SCS unit as well as I went through my trial back in February, and am currently in the process of scheduling my permanent implant surgery; there will be a seperate post on this for all those following my story. Or is it a saga at this point?
I don't know if you've tried nerve blocks at all; Stallate Ganglion Nerve Blocks. From everything I have learned and been told about CRPS there isn't much they can do for us. You are either one of the lucky ones where you respond and make improvements, and it can actually be reversed/go into remission... or you end up with a story much like Laura's and mine. CRPS is infamous for being an evil disease that spreads to affect other parts of your body, as Laura has already mentioned. From my own experience my pain startd in my wrist and hand of October 2007. In six months in crept upwards to include my elbow. It slowed down for awhile, but by October 2009, when I finally found a pain management doctor who not only believed I was in incredible pain, but was able to tell me what I had, it had spread to include most of my entire right arm, and was threatening to take over my shoulder. Now it's my entire right arm, part of the clavical/pectoral area, the scapula region, and into my neck.
I cry and scream more then laugh and smile, and something like what happened today, has become my normal routine. I'd spent alot of time in the car, but at least I'd wisely taken my pills with me. I take Percoset 4 times a day, and in a few days I'll be having my doseage upped.... again. But after spending from 9am to 3pm in the car and on the road, with a few stops to buy cat food, look at yarn, and visit my surgeon, by the time I got home I had a snack and laid down on the couch where I promptly passed out for over two hours. When I'm in between doses I take extra strength tylenol. In winter I have finger less gloves and arm warmers, but you could easily wear something like super soft leg warmers to help keep the cold at bay if you're as affected by the weather as some of us.
That reminds me, Laura, does the cold bother your knees at all, or joints? How sensitive is your skin? Could you wear something soft and fuzzy?
In summer time I use BioFreeze to keep the heat (I live in the high desert) from aggrivating my condition as much as possible; I still end up swollen and sensative and can't stand the slightest touch to my skin.
I've gotten alot of good information recently about the SCS units; typical problems, things to ask, things to expect. An article that was written in Time Magazine about my story has done something I had hoped for; it put probably THE best CRPS and pain doctor in all of Southern Nevada in touch with me and he has given me a lot of good information as a result to try and help me. A compassionat doctor, I know ... don't pass out! I also have probably one of the best brain/spine specialists as my surgeon. Combined with a successful trial, even if it's only five years before it becomes and issue, I will take those 5 years of relatively pain free and more normal life then I have now.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant