does anyone has scs move to abdomen from buttock
hi, hope everyone is fine today, as we all know living with chronic pain make everyday a challenge. i was diagnose with crps on my right foot on jan 2012 after having an ankle injury, i lost the carlidge in the area near of the cuboid bone and that's created my bones to rub against each other and created extreme pain, my Doctor tried physical therapy,lumbar blocks,medications for pain but unfortunately or lucky for my i really don't know what's better, my stomach reactions are not good with any hydrocodone related meds so i got stock with medications that didn't relieve my pain that much so next was the scs implanted which was done on jan 2013 after my unit was place ,

a month after to be exact i started to have some types of pain,burning,sensitive just having a flare ups on my lower back where my leads are and my buttock where the generator was placed. i asked several times since than to my pain Doctor, whats wrong ? i requested a revision of my leads and battery connections to see if something moves so far nothing is wrong every month after each revision same thing nothing is related to the surgery i asked what about my crps what's my status on that well his response was in control because your pain level is lower than before that's true i was not able before to wear at least a tennis shoe i only used a custom made ankle brace now after 2 years of my accident i'm able to wear sneaker(tennis) shoe with a custom made inserts still with pain but less than before but my back and buttock pain is increasing every day

he told me that my crps can not be on my back (surgery areas) because crps only shows on the limbs not on the back and my generator was causing the flare ups so he recommended move to the abdomen,please, did anyone have the generator in the abdomen tell me how that work,i'm waiting on my ins to approve the position changes mean while i don't know whats best,by the way,sorry for my spelling mistakes,english is my secondary language,need help,thanks

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