Peripheral nerve stimulators

Posted by sparshall @sparshall, Jan 14, 2020

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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@alh123

I suffered and my life slipped away again , hasn’t returned yet after 7 years . I had a repeat DRG trial and it failed too …my nerves got irritated to electricity. Just recently tried the NALU PNS….failed too …my nerves just don’t like electricity now. So incredibly frustrating because I get 90% pain relief with a little bit of local anesthetic, and yet I’ve been trying everything for 11 years since it happened. My quality of life is very low …the one thing I really have left is my wife and 2 kids , I live for them . There must a solution out there to turn off a specific peripheral nerve . It would literally save my life because my current lifestyle is going to take me prematurely. I know because I am a physician ..or was before this happened .

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I'm with a sore lower back and pain in my toes. But, nothing like you are going through. I hope the medical society can come up with something that can help. In the meantime, you are in my prayers.

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@martyk

I'm with a sore lower back and pain in my toes. But, nothing like you are going through. I hope the medical society can come up with something that can help. In the meantime, you are in my prayers.

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Thanks for your kind words . What do you mean by the medical society?

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Physicians, and manufactures of medical equipment.

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@dhc684

What did you hear about Stimwave that was negative?. There is now published research about Stimwave helping pudendal nerve pain and none for Nalu. I had a DRG trial that failed and am planning to try Stimwave next because there seems to be more evidence.

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This was quite a while ago. At that time there was nothing published other than the company’s own study …nothing specific especially for my condition. If you have found something for Stimwave then thats great.
Thru some medical connections I had heard that they had had problems with their anchoring system and their was discord within the company about how to fix it amongst other things .if you have found a place that does a lot of them , great . Ask them how they have solved their anchoring problem. I’m guessing different medical conditions lend themselves better to different PNS systems but the problem is that you will find it very difficult to find a clinic or Dr that uses more than one system . ..Nalu, Bioness, Stimwave plus others ..I think it’s too early to say which is best for specific medical conditions. One way is to go through the literature and pick out the main Drs that publish ….Deer, Naidu etc . Go through the articles on your condition and see what Drs have contributed . Then see if you can find out which device they use and why. I think In the end they are all delivering lots of the same electrical stimuli …I liked Nalu because it had a big range incl burst and high frequency plus had the ability to be upgraded easily ( just install latest software in the “puck” ) I don’t know how easy it is with stimwave. However I have to admit the main thing I liked was the ability to have a trial run first . Lastly , I suspect any Dr using PNS is doing pudendal nerve as well because it is relatively common …I guess the key is find someone who has done a lot and can answer your questions. Look into how you live with the device afterwards and how that looks. I wore the Nalu puck thing for a week and it was no problem …I forget what you have with stimwave . Interestingly, there is only one system being trialed in Canada at the moment and it is Stimwave . I’m in BC , the Drs using it are in Ontario and I wasn’t allowed to go on their waiting list …so had to go to the states. I know this all sounds confusing but that’s what I found when I looked into things ..hope you find some of what I said helpful
Good luck .

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If a company is publicly-traded, securities' analysts following it frequently are the canary in the coal mine about any problems with its key products. The institutional investors in Peloton were dumping the stock while it's sales were still growing despite the injuries and deaths of pets and toddlers under the stupidly-designed treadmills. And a subscription to the email notifications from the FDA about food, drug and med equipment recalls or investigations is a free resource. ('Free meaning you don't pay for it because it's funded with the taxes you already have to pay.)

For drugs, the FAERS public access to post-approval negative side effects ("adverse effects") is another canary in the coal mine. You can search by drug name and then sort the results in myriad ways including by adverse effects. (Amgen's Prolia has 117,000 reported side effects not listed in the company's package insert for consumers. 60,000 in one 2-year period. It's been on the market in the U.S. for just under eleven years. It's an injection given every 6 months. Meaning once in the body, it's, well, in the body until it's finally not.)

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@alh123

I just finished a NALU PNS trial in Calif with a Dr Ramana Naidu. It was an excellent experience in most ways but unfortunately PNS did not work for me . I chose Nalu because the literature that I could see and word of mouth seemed to suggest NALU being the best. However there are no independent studies out yet on these expensive devices …the studies out, are all ones done by the company themselves as part of their R+D. I had heard by word of mouth that Stimwave had a few problems . Couldn’t find any anecdotal evidence for NALU but through a few webinars and things ,it seemed to me to be the one to try. It’s design is the best in my opinion too …including that you can trial it for a week just like you can an SCS device. Expense wise this is good because I am a self pay living in Canada , so I have no coverage . I already had to pay for 2 DRG experiences …one trial with implant , then when that stopped working , another trial . A huge amount of my retirement savings went on this ( I’m 62..it happened when I was 51.)
The Nalu trial procedure was simple , I had excellent follow up and frequent adjustments by the company rep during the trial …it just didn’t help.
I went to Dr Naidu as when I looked into the world of PNS his name kept coming up and he is very approachable . He was convinced NALU was the right thing for me to try and when I looked into it , I agreed. He is friendly , knowledgeable, seems to listen to understand your situation and is technically excellent.
I just got home 3 days ago after a 10 day trial. It’s very slick technology . Unfortunately, from a peripheral therapy point of view , I’m sort of at the end of the line and don’t know what I’ll do next . Give up or keep looking ?
. Local anesthetic works like magic …you would think there would be something out there that could block a nerve's signal in the same way a local anesthetic does , but without the need for injections of a chemical that scars the tissues eventually .
If anyone has any connection with ideas along these lines , let me know . I am looking for a peripheral physical intervention that mimics local anesthetic. ( for the purposes of this discussion.)
I am very aware and have been involved with the huge world of chronic pain theories around neuroplasticity and centralization …that is not for this discussion . I have one very accessible nerve in my thigh causing the problem.
I’m looking for something that doesn’t involve surgery ,RF, temperature high or low , saline , sugar , ketamine , etc etc . I need something that mimics how local anesthetics work thats doesn’t damage tissue .
I would appreciate if anyone has any ideas along these lines. I’m also happy to answer questions about my experience. I’ll try to be better at replying to this forum .

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alh, if you find something that works please post it here. I read these posts every day and can’t imagine a better place to get information. Doctors don’t have it which is so sad because I run into people every day who have neuropathy. Maybe in the grocery store, guy at the café, etc. etc. there must be a solution somewhere and I would be delighted to hear that you’ve discovered one. Blessings to you, bcool123

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@martyk

Physicians, and manufactures of medical equipment.

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Oh , I get it . Yes I hope so too ‘

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@bcool123

alh, if you find something that works please post it here. I read these posts every day and can’t imagine a better place to get information. Doctors don’t have it which is so sad because I run into people every day who have neuropathy. Maybe in the grocery store, guy at the café, etc. etc. there must be a solution somewhere and I would be delighted to hear that you’ve discovered one. Blessings to you, bcool123

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Thank you for your kind words. I certainly will .

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How did things make out with the Stimwave? Any reduction in pain? Thanks

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@callalloo

If a company is publicly-traded, securities' analysts following it frequently are the canary in the coal mine about any problems with its key products. The institutional investors in Peloton were dumping the stock while it's sales were still growing despite the injuries and deaths of pets and toddlers under the stupidly-designed treadmills. And a subscription to the email notifications from the FDA about food, drug and med equipment recalls or investigations is a free resource. ('Free meaning you don't pay for it because it's funded with the taxes you already have to pay.)

For drugs, the FAERS public access to post-approval negative side effects ("adverse effects") is another canary in the coal mine. You can search by drug name and then sort the results in myriad ways including by adverse effects. (Amgen's Prolia has 117,000 reported side effects not listed in the company's package insert for consumers. 60,000 in one 2-year period. It's been on the market in the U.S. for just under eleven years. It's an injection given every 6 months. Meaning once in the body, it's, well, in the body until it's finally not.)

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Thank you for the information it helps that somebody cares

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@earringsbylulu11

Thank you for the information it helps that somebody cares

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How nice, thank you!

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