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.

@texasaviatrix

Thank you for your kind words, Hank.

I am a private pilot. My husband and I lived in our own 100 acre airport and made a living in aviation. We flew all over the country and I miss it terribly.
While I could still physically fly, I can no longer get a medical (which allows you to exercise the privileges of my pilot’s license) due to the fact that I take opioids for the pain.

As for the legal issues, it was a mess. Although I had a perfectly healthy back before the surgery and came out of the hospital with my tail bone snapped off, I wasn’t properly diagnosed until 5 months later. Since whatever happened to me was denied by the hospital, I had no proof. If I had an x-ray of my intact tail bone immediately before the surgery and another one showing the break immediately afterwards, I would have had a case. As it was, the hospital claimed I could have broken it any time after I left the hospital. Only God and I know the truth.

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Hi @texasaviatrix sorry to hear you can no longer fly due to your health. It had to be awesome having your own airport. You can actually enjoy flying once again. Have you tried creating your own simulator? Using VR(virtual reality) goggles makes it even more interesting and SO real. You can see examples on youtube.com from people who review the different equipment. You can select a plane and any worldwide airport. If you prefer a carrier is also available. The control panel is the actual panel on the plane you select. With the goggles anywhere you look you will see an image. It makes you feel as though you are in the plane. Nice way to get away for a vacation especially in today’s world. This experience may distract you from the pain you are having. I hope this helps. Toni

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@texasaviatrix

Thank you for your kind words, Hank.

I am a private pilot. My husband and I lived in our own 100 acre airport and made a living in aviation. We flew all over the country and I miss it terribly.
While I could still physically fly, I can no longer get a medical (which allows you to exercise the privileges of my pilot’s license) due to the fact that I take opioids for the pain.

As for the legal issues, it was a mess. Although I had a perfectly healthy back before the surgery and came out of the hospital with my tail bone snapped off, I wasn’t properly diagnosed until 5 months later. Since whatever happened to me was denied by the hospital, I had no proof. If I had an x-ray of my intact tail bone immediately before the surgery and another one showing the break immediately afterwards, I would have had a case. As it was, the hospital claimed I could have broken it any time after I left the hospital. Only God and I know the truth.

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@texasaviatrix Your story of what happened to you with your tail bone is just criminal. Like you said, "You and God know the truth." What an experience. And now, to have such pain. I am just so sorry. LoriRenee1

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@avmcbellar

Hi @texasaviatrix sorry to hear you can no longer fly due to your health. It had to be awesome having your own airport. You can actually enjoy flying once again. Have you tried creating your own simulator? Using VR(virtual reality) goggles makes it even more interesting and SO real. You can see examples on youtube.com from people who review the different equipment. You can select a plane and any worldwide airport. If you prefer a carrier is also available. The control panel is the actual panel on the plane you select. With the goggles anywhere you look you will see an image. It makes you feel as though you are in the plane. Nice way to get away for a vacation especially in today’s world. This experience may distract you from the pain you are having. I hope this helps. Toni

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Thank you, for the suggestion. I am familiar with the VR simulators. Although the technology came along long after I got my license, it is used in many flight schools today. I once had an opportunity to “fly” a commercial simulator, used to train airline pilots. They are full-motion exact replicas of the actual flight deck with incredible 180 degree views of the actual terrain you are simulating flying over. It’s fun and educational. But I’m afraid there’s nothing like pushing the plane out of the hangar, firing up the engine and watching the ground and your cares fall away. I guess I’m spoiled. I haven’t given up the hope of getting back in the cockpit someday. Everyone has to have a dream.

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@texasaviatrix

Thank you, for the suggestion. I am familiar with the VR simulators. Although the technology came along long after I got my license, it is used in many flight schools today. I once had an opportunity to “fly” a commercial simulator, used to train airline pilots. They are full-motion exact replicas of the actual flight deck with incredible 180 degree views of the actual terrain you are simulating flying over. It’s fun and educational. But I’m afraid there’s nothing like pushing the plane out of the hangar, firing up the engine and watching the ground and your cares fall away. I guess I’m spoiled. I haven’t given up the hope of getting back in the cockpit someday. Everyone has to have a dream.

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@texasaviatrix you’re welcome. I have seen the educational simulators used to train pilots. Take a look at the simulators with VR. You will be amazed! I have seen youtube.com videos where the pilot sits in the cockpit, starts the engine, and takes the plane out to the runway. The pilot can see the back of the plane when turning his or her head from the seat and also can view the outside from the side or front windows. I watched a pilot fly a jet from a carrier. For take offs and landings the pilot could see the controllers on the ground waving their flags. It looked very real. I also saw different countries and their airports. Planes fly low enough where you can see the towns or villages. Take a look at the videos and decide if it is something that may offer help. Hoping your dream comes true. Best wishes. Toni

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@bustrbrwn22

@lorirenee1 @sunnyflower you are both saints. I am still in the all about me part of my pain journey. Maybe you never went through that? It is petty and ugly. I am blessed to have a wonderful husband who deserves so much more.

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We're twins. I don't complain, but don't know how my husband can stand my moaning like when I was in labor! Can't help it, just comes out. Have you had any relief yet? I pray so!! I treasure you both, Jen and Lori Renee @lorirenee1 🤗🙏🌹

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@sunnyflower

We're twins. I don't complain, but don't know how my husband can stand my moaning like when I was in labor! Can't help it, just comes out. Have you had any relief yet? I pray so!! I treasure you both, Jen and Lori Renee @lorirenee1 🤗🙏🌹

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@sunnyflower Hi Sunny, you are just a joy to me. You uplift everyone, and your spirit shines. You give your all, in spite of your agony. Just, GOD BLESS YOU!!!!! LoriRenee1

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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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Hello @sprinrosa64 and welcome to Mayo Clinic Connect. I can see that you have been suffering from severe nerve pain below your knee and are looking into some implants to help with your pain.

You will notice I have moved your post into an existing discussion on peripheral nerve stimulators so you may connect with members like @fredjan2016 @sparshall and @lorirenee1 who have used devices to help with pain.

You may also be interested in the following related discussions:

- Chronic,debilitating pain after knee replacement:
https://connect.mayoclinic.org/discussion/chronicdebilitating-pain-after-knee-replacement/

- Hypersensitivity Nerves After Knee Replacement:
https://connect.mayoclinic.org/discussion/hypersensitivity-nerves-after-knee-replacement/

- Foot neuropathy after total knee replacement:
https://connect.mayoclinic.org/discussion/foot-neuropathy-after-total-knee-replacement/

Have you consulted with your provider regarding your interest in implants?

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@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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@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
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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