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Has anyone tried a spinal cord stimulator for small fiber neuropathy?
Hi, I’ve had burning and pins and needles in both of my feet for over three years now. I’ve seen 3 podiatrists, 2 neurologists, back and foot surgeons and physical therapist, acupuncturist, and pain doctors. I’ve had two nerve conduction studies. The first one said tarsal tunnel and second said it’s not tarsal tunnel, maybe idiopathic small fiber neuropathy. They have done X-rays, an MRI, steroid injections, and I paid out of pocket for 10 acupuncture sessions. I’ve tried gabapentin numerous times, Lyrica, Cymbalta, numerous topicals, amatripline, nortriptiline, lamotrigine and tramadol. Some meds raised my resting heart rate and the others didn’t help. My last doctor visit was vascular who suggested a CT scan to be sure it wasn’t a vascular issue, the test did not show anything that was related to my feet issue.
Several have said most likely idiopathic small fiber neuropathy. My primary says I’m prediabetic, with my A1C being 5.6. So she has me on metforman 500 mg/day.
My pain clinic doctor has suggested a spinal cord stimulator. They do a trial for 5-7 days before implanting something permanent.
Has anyone had this done? Does it work? Any insight you’re willing to share is appreciated. Thanks.
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What area was scanned with the MRI?
Mid to lower back
I was told by a pain doctor that an implented device in the spine was for people that had extreme back pain. He said it would not help with my foot neuropathy, pins and needles.
I had one placed for failed back surgeries. Helps a little for pain but not for neuropathy symptoms.
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1 ReactionThank you for your response. I will add this to my list of questions.
I have this. Took 30 years to get a diagnosis. No one has been able to tell me anything about it. All of the doctors tell me that they know nothing about this disorder What do you take for pain?? I suffer so bad.
It has helped tremendously with my back pain in my Lumbar. It has not done nothing for my electric like shocks that I receive in my ankles and knees from time to time. It is my understanding that the scs is for nerve pain due to failed back surgeries. God bless you. Charles
I currently have a spinal cord stimulator. The intention behind mine is to help with 3 major areas: nerve pain waist down, low back pain, and pudendal neuralgia.
First, I want to express that the trial was one of the best things to ever relieve these issues. I graded it at 85% relief of all 3 major areas. Granted, it's hard to distinguish the relief because you're going to be in pain from the procedure, but if you're used to the pain you have, you'll notice a difference.
Second, I've been a bit of a "problem case" since I healed enough from the permanent device implant and 2nd surgery to reposition the leads, so please consider other perspectives and experiences other than mine. Many people I know have had success with their devices, mine is a bit of a let down.
On that note, after healing enough (6 or so weeks) from the original permanent implant, and getting programmed, not only did the pain relief NOT equal what I'd had at the trial (65% relief on the nerve pain at the time, nothing for the rest), there was an extra side effect I was experiencing that took months of reprogramming - and that is that I had a weird stimulation that hit my ribs and made it difficult to breathe. It wasn't anything major, just made it a little uncomfortable, but it was enough to the point that every time I got reprogrammed, it took at least an hour to try to tweak it, but it never fully went away. I went through that process multiple times over the next months and they even called in an Engineer from Texas to help - to no avail. I was scheduled for a 2nd surgery to reposition the leads and started the whole process over again after recovery. Over this 2nd course of reprogramming, not only was the ribs thing still there, it was a bit worse AND I was getting a sharp pain in my mid back on certain things. So, it's not better, it's worse - but I'm at the point of "Ok, I guess if I don't want surgery again, I have to live with it like this..."
I am still in chronic pain, my nerve stuff isn't being relieved to the degree I would like, and neither of the other 2 problems are being relieved either. So basically, I consider this a fail - although having it taken out doesn't seem like a good plan either. I'm going a different route right now and have basically put the handling of this device and the unanswered "what do we do now?!" for my surgeon on hold. He doesn't seem to have an answer anyway, everyone is stumped as to what's wrong, why it isn't working right, why these other problems even exist... so yeah.
I'm sorry that my story sucks, but again, mine isn't the only one out there. I haven't met or spoken with anyone else that's had these issues, they've all been positive and helped people out tremendously. I highly recommend at least doing the trial and seeing for yourself if it will help or not.
Feel free to ask any questions, I'm open to answering what I can about my experience etc. 🙂
Thank you so much for your comments. I’m sorry for all your issues. It surely gives me much to think about and question. It seems like this small fiber neuropathy is surely a mystery to all docs.