Wow, what you've been through. I'm sure by now you've read everything you can find including this forum. If you haven't already find articles about RSD/CRPS by Dr. H. Hooshmand. He has an excellent one specifically about the spread of this awful disease.
I would get a second opinion before I had ANYMORE surgery.
I went through the trial SCS and was really scared then, but am still undecided whether to get the permanent.
Can any Dr. really give a certain answer given all the unknowns about this disease? Sounds like they've already done you a diservice.

How many revision surgeries have you had??

I have two SCS's (cervical & thoracic) that were implanted two years ago. I had a revision done, five months after implant, to the thoracic leads and battery because the leads migrated and the battery really hurt where is was placed in the butt/hip area. So that battery was moved to the front/side, kinda near the base of my rib cage area. I need another revision, the leads have migrated again and that same battery is twisted. I developed this awful pain in my lower back after the first surgery and it hasn't improved. Dr is baffled!

I agree that you should get a second opinion. You most certainly can get RSD/CRPS in a place other than your limbs! That tells me your dr doesn't know much about it. Mine started over 22 years ago in the right side of my face. In addition to my face, I now have it in both hands, feet, shoulders, left arm and left leg, abdomen, head and internal.

All the best,
Nanc

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

Hi Nanc i was wondering if your dr did an mri,X-rays or ultrasound my dr does not want to perform any test unless the visual or just to touch the insitions areas i specifically request an X-ray but no luck i turn off my scs since sunday because can't tolerated pain any more and since then i have some relief i called today to try too see him but his in on vacations until next monday and my rep has not called me back yet but i'm ready to go next week and i don't want more excuses from him but i want to go prepare i know something is wrong with my leads and battery i'm not imagining things,thanks Nanc and if anybody outer have any other suggestions please help me and thank you

Hey there! My doctor sent me for a series of x-rays and did a physical examination on the battery site (you can feel that it is twisted). You cannot have an MRI when you have spinal cord stimulators. I don't understand why your doctor will not send you for x-rays, it is really the only way to see where the leads are. I have read a lot of posts on here about doctors refusing to send patients for x-rays. I don't get it?? You know your body better than anyone and your doctor should listen to you! I know I could tell something was wrong, thankfully my doctor listened, because I was right!
I think you definitely need to get in with your doctor soon and keep calling the rep until he/she calls you back. You need to be assertive with the doctor. I think you really need to look for a new doctor too!
Good luck!
Nanc

Thanks for your advice, I read Dr. Hooshmand articles because there are quite many,I really thing they are very accurate with the symptoms of crps but also provide the answer we all want to heard, is hard to deal with this condition and if you are not sure about the permanent scs implant don't do it, is hard to live with sequels of another chronic pain, there many people like me with more problems and also some that for than scs work, I guess crps and scs are not meant to be and Dr. Hooshmand articles clarify so many questions that for me are a little late but stil can stop future more serious medical complications and happy but disappointed as well, hope you take a wise decision everything can change in a quick moment and we always will have some doubt but have faith and good luck,blessing to all of you