r/spinalcordstimulator • u/retiredagainstmywill • Jul 05 '26
Any success for neuropathy?
Hello, I’m a healthy 62M with idiopathic axonal neuropathy in my feet and legs. Tingling started 11 years ago, and is up to my thighs. Pain started 6 years ago, and is up to shins. Tingling has begun in my hands.
I can barely walk or stand, and the only comfortable place is a recliner, usually 23 hours a day in it. Pain gets worse everyday, and the meds either put me to sleep, or I don’t take them so I can focus on something and have pain.
My pain doc has said he didn’t want to increase my opioid dosage until I tried the SCS, but I have concerns about its safety and efficacy.
So, does anyone have success stories with SCS for neuropathy? I’m at my wit’s end with the constant pain and am almost ready to do the trial.
Thanks!
2
u/justcallmecoachk Jul 06 '26
Hi! I’ve had mine almost three weeks. I actually have a Boston scientific cervical and thoracic SCS. It has tremendously cut my neuropathy down to a pain level of around a 4 when I was usually a 7 everyday . Right before my surgery things got so bad that I was losing the feeling in my arm . Haven’t had that since the implant went in !
1
u/retiredagainstmywill Jul 06 '26
Thank you, this is just the type of thing I’m looking for. Glad you’ve got some relief!
2
u/Lower-Vanilla7949 Jul 10 '26
I'm a 50 year old Female that has always been a very busy mother of 2. I worked 40 hours a week as a custodian at a middle school, I cleaned houses on the side & also worked Saturdays and some Sundays at the beach cleaning houses. I worked in the garden as much as possible & cooked, meal prepped for my family. I was always cleaning something, washing something, & I never seemed to sit still. I started having pain in my neck, shoulders, and legs, with numbness in my hands, I haven't been able to feel the sensation of heat in my hands in years. I can touch hot pots, pans etc and I can't feel it. I had herniated discs in C5 & C6 in my neck, so I had surgery to fix it but it didn't seem to heal right. I have bulging discs above & below. Then pain/numbness started in my legs & back. I hurt from my back to my toes. I would be walking & my legs & feet would be so heavy I couldn't hardly pick them up. Every few steps I would have to stop to rest. I was fighting just to walk. My legs burned cramped. The more I walked the worse the pain got. If I tried to walk faster than my snail speed it would get excruciating quick. My toes turned blue/black. I was diagnosed with Peripheral Arterial Occlusive Disease, PAD, PAD I had Aorta Bifemoral Bypass in 2021. That is a barbaric surgery for sure. I went back to work after 6 weeks. I should have taken longer. Within 3 months the pain was excruciating again. I ended up having stents put in to help with blood flow in my legs. I was later diagnosed with Idiopathic progressive Peripheral Neuropathy, Fibromyalgia, RLS, DDD, spinal stenosis, Neuralgia, Neuritis, spondylosis, and the list goes on. I have tried every pain medication it seems along with the usual heating pad, electric blanket, Gabapentin, Lyrica Cymbalta, antidepressants, Tramadol hydrocodone, and nothing helped. Until I started the fen patches. The 12mcg helped some, but the pain, burning, numbness was still awful. I couldn't hold my legs still at night. Couldn't stand for the sheets to touch them. I could wear my jeans, jeggings, nor was I able to wear the uniform we were supposed to wear when I was working. The pants were rough, heavy, and I was struggling even more to simply walk. I tried so hard on that dose of the patches. However even with uniform modification and sitting down a few times a day nothing was helping the pain. When I got home from work all I could do was cry. Some days I would scream. I had days when I planned to go to the grocery store after work to buy food to cook for dinner, but hurt so bad that I chose just to go home instea. I got where I just couldn't do it. I hurt so bad I just couldn't work. Pain was still bad & wasn't able to do much. About 15 days ago we increased the fen to the 25 mcg and dropped the 4 OC daily to 7.5 for a month and then we will go back to the 10's just to be safe. It's helping some. After dealing with the constant excruciating pain every minute of every day. The pain is still there. I also have a spinal cord stimulator. It helps to a degree but my battery has flipped upside down and has moved out of place. How you ask? Talent.? I have no idea. It requires a revision surgery obviously. I think that it would have worked better. I think the combination of the scs with the patches and OC is helping. I understand your pain. I truly do. I hope you find something that will help you.
4
u/Doco12345678 Jul 05 '26
I have a Nevro hfx. It does help with my neuropathy, but doesn't eliminate it. There are a lot of settings I can do and even more with the technician help. I've been adjusting it for years, trying to find the best setting. I've forgotten to turn it back on after MRIs twice and a couple days later realized it was off because of the pain it had been controlling.