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Peripheral nerve stimulators
This is a long shot, but I’m looking for people who have used implanted peripheral nerve stimulators (PNS) to control nerve pain. They block the pain signal to the brain. Stimrouter and Stimwave are major brands. These are NOT the same thing as spinal cord stimulators, of which there are many brands. I’m about to have a Stimwave implanted to block intractable pelvic and leg nerve pain.
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This is my first post. A friend told me about the clinic's support groups. I was diagnosed with Idiopathic Neuropathy in 2016 after both knees were replaced. I had "drop foot" on my right foot. My upper shin areas for both legs have been numb since that surgery. I have had tons of physical therapy and I exercise regularly. I experience pain in my feet as well as burning and freezing sensations. I also had a hip replaced which was messed up -had 4 dislocations at 6 months - and had revision surgery in 2021. I use a walker or 2 canes to walk . My balance is terrible, though I regularly do balance exercises and have had PT or those as well. I am currently experiencing increased numbness in my ankles on both feet but the right is worse. When walking I sometimes feel as if I am stepping into a hole with no bottom. I have numerous back conditions that likely have caused my neuropathy and have been told that I do not need surgery. I am pretty sure I would not have it anyway. Does anyone have major balance issues or numb ankles from your neuropathy? Any suggestions on how to help myself? Thank you!
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1 ReactionI have tested the stimulator for the back. It really didn't do anything for the pain. I have heard from my pain management doctor that they have had many patients that it had helped but I guess I was not one of them.
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1 ReactionYes, over the last 2 years I fell down in my garage and hit my 2 rear-ends. Everything was on my rear-ends to my feet. The pain killed me - for the last 2 years. No more cutting our grass; no more taking care from one room to another; no more walking around our area; and on…
This year a few mths ago, I had a choice: (1) Leave it as it is and take my meds for pain; (2) Get another meds for my pain; (3) For a surgery that can fix my lower back with a problem of my nerve and delete my pain from my rear-end to the bottom of my feet. That pain hit my rear-end and thru the back of my legs.
My Doctor A came up my choices. I moved to choice #3 - surgery. There was a decision: Ended my pain or (A\less percentage) that could hurt my back… well, I saw a photo of my back area and the problem was the nerve between 2 of my (sorry, my TBI doesn’t talk in my brain, so I can’t say the word) back from my right-side rear-end to the bottom of my back. It took working on my surgery that was 4-6 hours+ then sent my hospital room even that I would sleep, until the end of that day or the next morning day.
Year, the pain is gone. Yes, but there are diff problems from my accident at my garage. No pain and thankfully, I can now, working on my body & brain control the other lower body. I work and stretch my legs and use my brain to add - not easy - of what I can’t do, before - doing better ways each mth. ❤️
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2 ReactionsMy other words are: XR Lumbar
Hi Sparshall, I am considering the SPRINT PNS system. I have PN in both feet and a sciatic condition down one leg. I do not want a permanent PNS, so I think I'll opt for this and try one leg at a time. I wear it for 2 months and then it comes out and we do the other leg. I'm told, it can give considerable relief. I don't really trust anything now as I've tried so many meds and treatments. Are you getting the temporary first and if it works (hopefully) you'll get a permanent PNS? I'd like to talk off-line with you and compare notes. Can you PM me an e-mail or phone number. I am bitter after throwing away $10,000+ in stem cell therapy. We are in pain and people try to take advantage of us. Best of luck and hope to speak with you and compare notes.
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2 ReactionsI’m curious about your experience with stem cell from what I see very briefly you think it didn’t do anything. I’d love to hear more about your experience.
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1 ReactionI was in the middle of a post & it just went away? Anyway, I had a laminectomy L3 thru S1. worked for 6 - 8 months; Then shots 14 - 16 months, they stopped working; Tramadol stopped working, now using hydromorphone with good relief. Had 2 ER trips (months apart) for morphine shots. Did a Nalu trial with good results. Scheduling a permanent implant soon. Not seeing any alternative & I'm hoping to get some feedback from the group. Thanks
@jsyjackmayo I found a discussion on Spinal Cord Stimulators where the Nalu stimulator is discussed. Here is the link where you can connect with other members.
Neuropathy - "Peripheral nerve stimulators"
https://connect.mayoclinic.org/discussion/peripheral-nerve-stimulators/
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1 ReactionI just had the Nalu PNS put in, I'm in the trial period. The first 2 days were awesome and I thought I had found an answer to my prayers. I've had it now for 8 days and my pain is worse.
I just became aware after many years that I can’t spread my toes apart on either foot except my big toe & 2nd toe. Has anyone else experienced this?