Im afraid your doctor is an ***, there was a paper published some tiome back that said 60% of RSD sufferers got it at the incision sites when having SCS implanted thats why some US clinics will no longer use themand there are other papers out there that say in 10% of us it goes full body, all 4 limbs, torso, neck scalp eyes mouth and internal organs.

Hey! Do you happen to have that paper (or link to it)? I would be interested in reading it.

Thanks!

Unfortunaetly I didn't save it at the time, it's somewhere on here, http://www.thblack.com/links/RSD/index.html

I just wanted to tell you since our stories are somewhat similar. I have two scs's. Thoracic at T8 originally then revised to T9, and C2. I also had a seroma at the left hip battery site. I do have some burning problems at both battery sites. I assumed that it was due to them being close to the skin. I am skinny (5'7 around 112-115 lbs). So I have been told there isn't much padding to guard when you bump things so I expect a certain degree of pain. There was murmur of spread, no confirmation then.....
I saw a neuro muscular specialist at UT southwestern that confirmed I had full body RSD. She concluded I had it in my back, incision spread. Thoracic spread that was due to the surgery and lumbar spread due to a myelogram. Doesn't seem to be any cervical issue yet. She said to expect it. she also did nerve biopsies (extremely painful) and I also have small nerve fiber neuropathy, peripheral neuropathy, seizure disorder of unknown origin, and optical neuropathy.
There was a mention of moving my left hip from hip to abdomen, due to recent discoveries we are not doing that.
Anyway, that was my story. So I did get back spread, and my doctor did give me papers on systemic rsd and e other neuropathies. It's all treated the same way. Pt, OT, meds, the scs's, and basically just management.
On the plus side, I did get approved for ssi on the first try.
I hope this helps! Private message me or you can send me a message and I'll give you my number.

TK

thank you so much for all your support, i know only people like us,suffering with this condition really understand what surround us and is not easy, i will definitely will insist on a 3rd opinion before i take any action, i really regret
not to ask for any help before, sometimes we think that we will be able to handle everything by ourselves but we definitely need some kind of support and now i'm in the right place,thanks, these condition is really getting zoo tired