Posted 9/9/2011 10:30 PM (GMT -6)
As you've probably discovered, CRPS/RSD pain has a lot of different elements to it...allodynia/hypersensitivity to touch, burning skin, 'electric shock' pains, aching muscle pains, bone pain, etc. For me, the SCS works really well, but only on the hypersensitivity and burning skin. It doesn't have any effect at all on those deeper pains - especially not the deep, burning bone pain - which when it's bad I liken to someone twisting a white-hot corkscrew through my bones and tearing it out again, over and over, ad infinitum. But considering the difference it makes to my hypersensitivity - before I had my SCS implanted, I couldn't wear long pants, a shoe, or even a sock, couldn't weight-bear, leg couldn't be touched - it is worth it just for that, even though I still take oxycontin and a cocktail of other meds and treatments to try to manage (often not very successfully) the other elements of the pain.
I have had a lot of problems with it - have been through multiple lead migrations and revision surgeries with it, but I wouldn't be without it for the world now. Any questions at all, please just ask.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio