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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@jesfactsmon

@sprinrosa64
Hi, I am chiming in here just because you I think you should proceed with caution when it comes to nerve stimulator implants. Just today I read of another person, @faithgirl30 who had an unsuccessful experience with a nerve stimulator implant called a Scientific Wavewriter. One thing that a few people who have had stimulators have said is that the trial implant which is done for a short period to let you evaluate how much a permanent stimulator might help you often seems to work a lot better than the permanent one ends up working. Beside @faithgirl30 , @lorirenee1 had a similar experience. And another member, @jimhd, had initial good results the first year with his spinal cord stimulator only to have it stop working during the second year, and it essentially is doing nothing for him at this point. Still another member, @fredjan2016 said that his ankle stimulator helps him stand (which he is glad for) but does not help his pain. I'm not saying there are not any unqualified successes, there are. It just seems like a good thing to know up front what your personal likelihood of success may be. Best, Hank

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@sprinrosa64, Thanks @jesfactsmon, I couldn't have said it better. The disappointment with these stimulators has to be hard to tolerate. Sure makes me sad to read about it so frequently. Personally, I lean toward a human being who has studied for years, knows every bone and all of the connective tissues that your body contains, knows what should be there just by a touch, and is able to treat that cyst on the meniscus after finding it by feeling it.

I remember my orthopedic surgeon when I visited him 3 years after the surgery to talk about this kind of pain. He jumped up....walked me down to imaging where they took some pictures and together we went over the evidence. When he said goodbye that day, he gave me a gentle hug and said, "I'm sorry Chris, it is the fascia. The TKR machinery is fine."

Just so we are all on the same page...I am going to invite @jenniferhunter to drop by with a message about surgery and MFR.

May you be free of suffering and the causes of suffering.
Chris

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@artscaping

@sprinrosa64 Good afternoon. I was just surfing by and took an opportunity to jump in here. Connect is a group of folks who "have been there". They have personal experience to share. As mentors, we neither diagnose nor prescribe. We listen and try very hard to connect you with someone who has been there. Just remember, everyone is different in what they feel and how they describe it.

I have had the TKR and I have had the post-surgery knee pain. Please take a look at MFR, Myofascial Release Therapy. Fascia makes up tendons and ligaments and even things like your ITbands. So it can be tough, or delicate as it covers every part of your body like a glove. Next time you cut up a chicken.....look at the membrane between leg and body. That is fascia. When it is near surgical areas it can build up and become a restriction. The fascia restrictions then cause pain all over the area. Many of my fellow TKR members find some relief.

There is a discussion about MFR on Connect.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you tried any alternative treatments?
May you have peace and ease.
Chris

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My pain seems to much more nerve than muscle not sure if MFR is useful on nerves

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@jesfactsmon

@sprinrosa64
Hi, I am chiming in here just because you I think you should proceed with caution when it comes to nerve stimulator implants. Just today I read of another person, @faithgirl30 who had an unsuccessful experience with a nerve stimulator implant called a Scientific Wavewriter. One thing that a few people who have had stimulators have said is that the trial implant which is done for a short period to let you evaluate how much a permanent stimulator might help you often seems to work a lot better than the permanent one ends up working. Beside @faithgirl30 , @lorirenee1 had a similar experience. And another member, @jimhd, had initial good results the first year with his spinal cord stimulator only to have it stop working during the second year, and it essentially is doing nothing for him at this point. Still another member, @fredjan2016 said that his ankle stimulator helps him stand (which he is glad for) but does not help his pain. I'm not saying there are not any unqualified successes, there are. It just seems like a good thing to know up front what your personal likelihood of success may be. Best, Hank

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@jesfactsmon Hank thanks for threading this altogether. I know this sounds conspiracy-theory like but something seems “off”. Why does the trial work in the office? Is something happening there that cannot be replicated into actual production?

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@lorirenee1

@jesfactsmon and all my other Neuropathy Warriors!!! I am recovering from DRG implant, but it is not easy. I am in lots of pain where the battery was implanted, where the wires were implanted, and my feet still hurt. Today is Sunday. Had the surgery just this past Thursday, so surgery is still pretty fresh. Not up to writing much now, but I will keep everyone informed as I feel better. God willing, the feet will start doing better soon. They did not start improving till the 7th day of my 10 day trial, so hopefully, I am a slow responder. Anyway, gonna go take a nap. Love to all, Lori

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Praying

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@sparshall

My Stimwave was turned on in the OR and I went home pain-free.

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Thanks best words I have heard

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@sprinrosa64 Before undergoing any invasive medical procedure it's important to collaborate with your provider, do your research, and weigh the pros and cons. Only then can you make a well-informed decision. I think that it is important to note that pain in complex and specific to the individual. Many people find nerve stimulator implants successful in treating their pain and we presumably have less traffic with successful procedures, as these individuals are no longer seeking answers.

May I ask what your provider has said about, "stimwave PNS electrical stimulation implants"?

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Mainly that nothing is guaranteed, the trial will give us the answer as to what we do next. He has had excellent results in the past but everyone is different. Thru my research i have found concerns about the implants moving

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@sprinrosa64

had TKR 2yrs ago and have live with server nerve pain just below knee. I have tried every injection, creams and even cut some nerves, now looking at stimwave PNS electrical stimulation implants , anyone know of these

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@sprinrosa64 Chris gave some great advice about fascial work and our myofacial release discussion. I have done this MFR work for several years and it is very beneficial. Any surgery will create scar tissue that you see at the incision site, and fascial scar tissue that you don't see internally along the surgeon's path. That tightens as it heals and adds to whatever pattern of tightness you already have in your body. Our habits play into this because if we don't use good posture and move our bodies, we get locked into a position and then can't move because the fascia adheres to itself. It is a webby film that converts between a solid and semi liquid as it stretches and rearranges itself. When it's locked, it's solid and dehydrated so it doesn't pass the fluids and electric signals through the body. When you get it moving and re-hydrated again, the body alignment improves and pain can be reduced or eliminated.

It would be worth your time to try this. If you just go to an electric stimulation implant, you'll still have the tight dehydrated fascia that doesn't want to transmit those electric signals. Nerve pain happens when something compresses it like tight fascia or a muscle. The spaces are very small where nerves pass. Bones also have outer coverings of connective tissue that the fascia connects too that likely connect to the scar on the skin surface. I have this too because of a compound ankle fracture that had 2 surgeries and I had an external cage screwed into my shin bone at the beginning which was later replaced by the internal plates. I do have tight scars where the cage was attached and I try to stretch that by pushing on my skin to stretch it with a little pressure.

Check out the MFR discussion. There is a provider search on the MFR website.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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This is where I get confused, I went thru scar tissue therapy year and half ago and after 3-4 sessions I was told there was no scar tissue to speak of and that I was dealing with nerve condition My range of motion is excellent and the pain is below the knee away from the incision

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@sprinrosa64

My pain seems to much more nerve than muscle not sure if MFR is useful on nerves

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Good afternoon @sprinrosa64, I want to respond to your statement about the purpose of MFR and how it may impact muscle as well as nerves. Here is a youtube video that shows you exactly what fascia is and how it operates in the body.


"reminder: MFR will not get rid of neuropathy. MFR will not treat neuropathy. However, MFR can Help manage and mitigate symptoms."

The deal is that fascia is a connective tissue....any nerves with signals from the brain must be transferred by connective tissue to the part of the body that you want to work for you. Unfortunately, for one or even more of a number of reasons our nerves have decided to die quite long before us. They take a very long time to rebuild. When the nerves can't do what they are supposed to do...they bring back pain signals to our brain and that is what we feel....pain and numbness.

Let me know if this helps you. Your questions and wonderments are completely legitimate. We cannot diagnose or prescribe. What we can do is listen.

So.....keep it up....I am right here.
Chrs

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