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.

Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any other people using this stimulation?

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@wilcy

Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any other people using this stimulation?

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Hi @wilcy, Great news that the permanent stimulator is working for you. You'll notice that I moved your message to this other existing discussion called "Peripheral nerve stimulators."

I think others in this discussion will be interested to here your experience. Is it helping with the neuropathic pain, spinal pain or both?

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@wilcy

Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any other people using this stimulation?

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Hi @wilcy, It sounds like the Medtronic stimulator is really helping with the pain. There are a couple of other discussions in the Chronic Pain group that you might want to join where members are talking about pain stimulators.

Pain stimulator: https://connect.mayoclinic.org/discussion/pain-stimulator/
Has anyone one tried the HF10 Spinal Cord Stimulation Device?: https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/

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@johnbishop

Hi @wilcy, It sounds like the Medtronic stimulator is really helping with the pain. There are a couple of other discussions in the Chronic Pain group that you might want to join where members are talking about pain stimulators.

Pain stimulator: https://connect.mayoclinic.org/discussion/pain-stimulator/
Has anyone one tried the HF10 Spinal Cord Stimulation Device?: https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/

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Hi John @johnbishop thanks for the link to the other discussion on nerve stimulators. Lori @lorirenee1 I wonder if you know about this as well? One person, Carl @cbrackle has had a drg in for 3 years. Just fyi in case you are not aware of his story. He posts about it at the discussion John mentioned. There are other people there as well. It's good to gather as much info from experienced users of these devices as possible. Hank

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@wilcy

Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any other people using this stimulation?

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Hi @wilcy I read some of your previous posts. So spinal stenosis caused your neuropathy. Can you describe how you and your doctors decided on the Medtronic brand spinal cord stimulator device? Did you go with the SCS because most of your pain is back pain? Any and all info along these lines would be very interesting to me. It sounds like you are happy with it so far. Are you still experiencing an 80% reduction in your pain level? My wife has PN and we are watching other's experiences with a lot of interest. Anything you'd like to share would be helpful. Thanks so much, Hank

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@wilcy

Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any other people using this stimulation?

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@wilcy Wow, incredible news! Im very happy for your progress.

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@jesfactsmon

Hi John @johnbishop thanks for the link to the other discussion on nerve stimulators. Lori @lorirenee1 I wonder if you know about this as well? One person, Carl @cbrackle has had a drg in for 3 years. Just fyi in case you are not aware of his story. He posts about it at the discussion John mentioned. There are other people there as well. It's good to gather as much info from experienced users of these devices as possible. Hank

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@jesfactsmon Hank, thanks so much for info on @cbrackle. You are so kind. I am not up to posting now, but will hopefully post tomorrow. ABBOTT lady adjusted my DRG stimulator, and pain is worse. Very trial and error. Will post tomorrow, God willing…..Love to you and Linda, Lori

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@lorirenee1

@jesfactsmon Hank, thanks so much for info on @cbrackle. You are so kind. I am not up to posting now, but will hopefully post tomorrow. ABBOTT lady adjusted my DRG stimulator, and pain is worse. Very trial and error. Will post tomorrow, God willing…..Love to you and Linda, Lori

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Lori, hang in there kid. Gotta have faith/hope for this thing. Let's keep positive and for now we wait and expect this to work out after further adjustments and some patience. I know you know ALL about patience. (By the way, what does it say about me that you post and I answer within minutes? Hey, I do have a life, really.)

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I'm putting this post under this discussion because ultimately nerve stimulators are the main point. First let me tell you what kind of a day my wife Linda is having. She felt so good today she wanted to go out to her favorite grocery store and shop. Shop! The last time she was out was in late February, to the same exact store. She put on a brand new mask (her first one!) and a pair of latex gloves and was ready for action. She got dizzy in the car and dizzy sometimes in the store. To her a drive in the car is A LOT of movement. She's had trouble in cars since she was diagnosed with fibromyalgia back in 1992 but it's worse now, quite a bit worse. After we were in the store a while she had to hang on to me for the last half of her wanderings, she was so unsteady. The trip was fun for her, just being out. She loved it. But her feet suffered. They were so red and swollen (lobster feet) by the time we got home and she looked like someone who had just been through a terrorist attack, very dazed and stooped from the pain. I think she is starting to think that this is going to be her life from now on and it's a hard pill to swallow (as most of you know). This is why I hold out hope for a nerve stimulator of some sort to maybe get her feet back from the brink. It has been a steady progression from 2014, little by little and now it's gotten to where neither of us is certain she will ever be able t travel to see family again (Connecticut mostly). I think just getting the procedure done is going to be a trial. Lori @lorirenee1 is going through that now. I am hoping to hear how @fredjan2016 does with his peripheral Nalu stimulators as that seems less invasive and simpler. I can't remember if anyone on Connect has been through it (the peripheral nerve stimulators) all the way successfully yet or not. I know Sandy @sparshall is hopeful she will ultimately have a good result. Is that still true Sandy? Would love to hear how it's going for you. Anyway, just wanted to tell someone about our adventure today. Best to all, Hank

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@jesfactsmon

I'm putting this post under this discussion because ultimately nerve stimulators are the main point. First let me tell you what kind of a day my wife Linda is having. She felt so good today she wanted to go out to her favorite grocery store and shop. Shop! The last time she was out was in late February, to the same exact store. She put on a brand new mask (her first one!) and a pair of latex gloves and was ready for action. She got dizzy in the car and dizzy sometimes in the store. To her a drive in the car is A LOT of movement. She's had trouble in cars since she was diagnosed with fibromyalgia back in 1992 but it's worse now, quite a bit worse. After we were in the store a while she had to hang on to me for the last half of her wanderings, she was so unsteady. The trip was fun for her, just being out. She loved it. But her feet suffered. They were so red and swollen (lobster feet) by the time we got home and she looked like someone who had just been through a terrorist attack, very dazed and stooped from the pain. I think she is starting to think that this is going to be her life from now on and it's a hard pill to swallow (as most of you know). This is why I hold out hope for a nerve stimulator of some sort to maybe get her feet back from the brink. It has been a steady progression from 2014, little by little and now it's gotten to where neither of us is certain she will ever be able t travel to see family again (Connecticut mostly). I think just getting the procedure done is going to be a trial. Lori @lorirenee1 is going through that now. I am hoping to hear how @fredjan2016 does with his peripheral Nalu stimulators as that seems less invasive and simpler. I can't remember if anyone on Connect has been through it (the peripheral nerve stimulators) all the way successfully yet or not. I know Sandy @sparshall is hopeful she will ultimately have a good result. Is that still true Sandy? Would love to hear how it's going for you. Anyway, just wanted to tell someone about our adventure today. Best to all, Hank

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@jesfactsmon Hi Hank, Your post about Linda made me cry. It is the happiest, saddest account of your day. I had no idea Linda had not been out in such a long time. To go out today, with such enthusiasm, and have such frightening results is just chilling. Do her feet normally turn like lobster feet? CRPS came to my mind when reading your description. I have a history of fibromyalgia, but never had trouble with motion. This is a new one to me. I do know that in one day, I could go to feeling decent to horrific with the whatevers of Neuropathy. I would get very pissed off from excruciating pain, and go and vacuum rooms in my house. Sometimes the pain would be excruciating, and I would walk down the street like the angry warrior. I could have 2 days in a row where I was pain free, and the next, could not bear how bad it was. When was the last time Linda has been to a neurologist? I want to tell you that today, I see the DRG as promising. I am exhausted emotionally, but I do notice a lot less pain, and balls of feet are less like solid concrete. Toes feel less stuck together. I want to talk to Linda, Frank. I think it is time I talk to her. Maybe we can all speak on speaker phone, or arrange a zoom conference. I have no idea how to do this, but my husband does. My heart goes out to you and Linda. Leading a life like she is leading is unfair. Just unfair. We cannot be on this earth to suffer so. Get back to me Hank, when you can. I will get here as soon as I can. Lori

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@jesfactsmon

I'm putting this post under this discussion because ultimately nerve stimulators are the main point. First let me tell you what kind of a day my wife Linda is having. She felt so good today she wanted to go out to her favorite grocery store and shop. Shop! The last time she was out was in late February, to the same exact store. She put on a brand new mask (her first one!) and a pair of latex gloves and was ready for action. She got dizzy in the car and dizzy sometimes in the store. To her a drive in the car is A LOT of movement. She's had trouble in cars since she was diagnosed with fibromyalgia back in 1992 but it's worse now, quite a bit worse. After we were in the store a while she had to hang on to me for the last half of her wanderings, she was so unsteady. The trip was fun for her, just being out. She loved it. But her feet suffered. They were so red and swollen (lobster feet) by the time we got home and she looked like someone who had just been through a terrorist attack, very dazed and stooped from the pain. I think she is starting to think that this is going to be her life from now on and it's a hard pill to swallow (as most of you know). This is why I hold out hope for a nerve stimulator of some sort to maybe get her feet back from the brink. It has been a steady progression from 2014, little by little and now it's gotten to where neither of us is certain she will ever be able t travel to see family again (Connecticut mostly). I think just getting the procedure done is going to be a trial. Lori @lorirenee1 is going through that now. I am hoping to hear how @fredjan2016 does with his peripheral Nalu stimulators as that seems less invasive and simpler. I can't remember if anyone on Connect has been through it (the peripheral nerve stimulators) all the way successfully yet or not. I know Sandy @sparshall is hopeful she will ultimately have a good result. Is that still true Sandy? Would love to hear how it's going for you. Anyway, just wanted to tell someone about our adventure today. Best to all, Hank

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@ jesfactsmon I do relate to Linda's outing filled with joyful emotion, adaptation and maybe some anxiety? I am incredibly happy she made it out of the house, in the car and to a market. This was a big day for her (and you)! It is burdensome that we pay the price for simple pleasures when we live with neuropathy, fibromyalgia, chronic pain disorders, etc…

I gave up driving last December at the height of my debilitating pains. Pain made me reclusive and I did not like it but I grew comfortable. I became afraid of igniting more pain by leaving my house. I became at odds with riding in a car with various discomforts and pains, from movement and jarring, to sound and lights. I developed anxiety from all of it. I knew I had to force myself out of my safe zone to find whatever normalcy was going to mean for me. Every time I pushed to go out, I paid a price but knew it was mentally healthy to tackle and accomplish, even if it meant I was bed ridden after and down for the day or night. Never did I like any of it and still don't. I'd get quite resentful that the bad presented, which means I lost focus of the good that presented. Mindfulness…always a student.

After a long winter of this, I started to believe my body was shutting down from lack of use. It's stated that excercise, movement, stretching is relevant to neuropathy. Practicing yoga or tai chi is beneficial and must be done as tolerated but, still done. Well, I did minimal stretching and that's about it. By April I mysteriously started to feel let up in certain places (maybe from myofacial release, maybe spring was in the air, maybe supplements kicked in, maybe the stars alligned). My point is I pushed little by little, in and out of pain and realized with every movement, like planting a flower pot, I was completely over stimulating my muscles. Bending to pull a weed set my legs on fire. I'm now able to do a smidge better with a bit less pain and I'm happy for that. I made my first drive in the spring as well. It was nerve wracking. I felt out of sorts and my body wondered what the hell I was doing! I had tried before but my body went nuts. So, there is my small progress…I drive maybe once or twice a week, 5 – 10 minutes max to one small destination like CVS. Sometimes I still put the car in park at a light to save my leg. It feels wonderful to have that independence back and I listen to my body when I cant do it. Many days the legs put me down without choice.

I've babbled too long. I just hope Linda knows I feel her frustration, sympathize with her pain and rejoice in her happy moments of which I hope will become more often. I hope she is motivated still, somewhere inside, to keep her fight and not let her feet win completely. I'm impressed with her day and hope more can be had. How about a portable wheel chair for the next grocery trip? Be well Hank and Linda. All the best to you both.
Rachel

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@lorirenee1

@jesfactsmon Hi Hank, Your post about Linda made me cry. It is the happiest, saddest account of your day. I had no idea Linda had not been out in such a long time. To go out today, with such enthusiasm, and have such frightening results is just chilling. Do her feet normally turn like lobster feet? CRPS came to my mind when reading your description. I have a history of fibromyalgia, but never had trouble with motion. This is a new one to me. I do know that in one day, I could go to feeling decent to horrific with the whatevers of Neuropathy. I would get very pissed off from excruciating pain, and go and vacuum rooms in my house. Sometimes the pain would be excruciating, and I would walk down the street like the angry warrior. I could have 2 days in a row where I was pain free, and the next, could not bear how bad it was. When was the last time Linda has been to a neurologist? I want to tell you that today, I see the DRG as promising. I am exhausted emotionally, but I do notice a lot less pain, and balls of feet are less like solid concrete. Toes feel less stuck together. I want to talk to Linda, Frank. I think it is time I talk to her. Maybe we can all speak on speaker phone, or arrange a zoom conference. I have no idea how to do this, but my husband does. My heart goes out to you and Linda. Leading a life like she is leading is unfair. Just unfair. We cannot be on this earth to suffer so. Get back to me Hank, when you can. I will get here as soon as I can. Lori

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Hi Lori, I think Linda's driving issues (started in 1983-4 or thereabouts) were attributed by us to fibro after we knew about her fibro, but learning about the existence of the condition Central Sensitization lately in discussions with you and Rachel not long ago makes us both factor that into the equation. She is and has been super sensitive to pretty much everything her whole life or certainly since we've been married. And when she was younger and more able to cope it was not a problem. Now that her body seems to be weakening it's becoming a problem. Especially noticeable since about April of '19. I mark it to after she took a steroid for a sinus issue, perhaps in March-ish of '19. She got her first severe itch problem maybe in April? It was bad for a while, quite bad. After a few months it seemed to be less of a problem. But her energy is taking a hit from the endless foot burning. Never stops but varies between a 2-3 level sometimes to 7-9 most of the time or maybe 65% of the time. Thank god she sleeps! That is a saving grace. Lori I think you are dealing with much more pain than Linda is (and that is saying something). When you describe your situation it boggles my mind. I am SO HOPEFUL for you and the drg install you are trying. My fervent hope is that you keep the 40% relief and get even more, much more after you have the actual installation assuming you do. I hope something like this can help Linda. I am dubious only because she is so sensitive that things that might help a regular person can backfire bigtime for her. So many things that other people recommend because it has benefitted them seem to do the opposite for her. She is just getting ready for bed (I just got up -we tag team – long story) but tomorrow I will read her your post with your suggestion to talk and let you know. You are a very good lady Lori. It's hard to believe so many fine people are having to cope and deal with SO MUCH just to be able to jst do the basics and live their lives. Sheesh! I appreciate this website so much as it really helps in so many ways to have it. Thanks my friend, will be in touch. Hank

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