1. < Neuropathy

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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lorirenee1 | @lorirenee1 | Jun 18, 2020

@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous life can be, I just microwaved a small glass bowl of glass noodles. And speaking of glass, the glass bowl exploded in my hand when I took it out of the microwave. Shards of glass everywhere, surrounded by 4 curious cats, and 1 five year old grandson, Noah. Here I am, wired inside, battery on my back, surrounded by glass. I literally squatted down on these still strong legs of mine, and cleaned up as best I could. Used my fucked up feet to push glass to my hardwood floors, squatted down, and got the rest up. It was either that, or call my husband to come home from work, and clean up. I thought that might be too long to wait, with glass everywhere. I never bent down. Not to do that with the wires in my back. I squatted. If these wires inside me have not become totally screwed up, it will be a miracle.......just, OH MY GOD!!!!! Love, Lori Renee

REPLY
2 replies
Hank | @jesfactsmon | Jun 18, 2020
In reply to @lorirenee1 "@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous..." + (show)
@lorirenee1

@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous life can be, I just microwaved a small glass bowl of glass noodles. And speaking of glass, the glass bowl exploded in my hand when I took it out of the microwave. Shards of glass everywhere, surrounded by 4 curious cats, and 1 five year old grandson, Noah. Here I am, wired inside, battery on my back, surrounded by glass. I literally squatted down on these still strong legs of mine, and cleaned up as best I could. Used my fucked up feet to push glass to my hardwood floors, squatted down, and got the rest up. It was either that, or call my husband to come home from work, and clean up. I thought that might be too long to wait, with glass everywhere. I never bent down. Not to do that with the wires in my back. I squatted. If these wires inside me have not become totally screwed up, it will be a miracle.......just, OH MY GOD!!!!! Love, Lori Renee

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Holy cow! I hope you are doing OK and were not injured. Microwaves scare me sometimes. I know how you feel though. The last thing you were prepared for in that moment happened. Comedy of errors. My sympathies Kiddo.

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1 reply
lorirenee1 | @lorirenee1 | Jun 18, 2020
In reply to @jesfactsmon "Holy cow! I hope you are doing OK and were not injured. Microwaves scare me sometimes...." + (show)
@jesfactsmon

Holy cow! I hope you are doing OK and were not injured. Microwaves scare me sometimes. I know how you feel though. The last thing you were prepared for in that moment happened. Comedy of errors. My sympathies Kiddo.

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@jesfactsmon Hi Hank, If I start broadcasting Radio Free Europe through my wires, I know that I am really screwed up. Ya know; life just happens. But so far so good. No glass injuries. Just a touch of gentle throbbing in the balls of my feet...just sent you a private message here to be facebook friends. Look for it in your private messages....Lori

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Hank | @jesfactsmon | Jun 24, 2020
In reply to @fredjan2016 "I completed my Nalu peripheral nerve stimulator trial and, in short, it was successful. Immediately after..." + (show)
@fredjan2016

I completed my Nalu peripheral nerve stimulator trial and, in short, it was successful. Immediately after they installed the wires, I was able to walk around the house for over 30 minutes. Over the next three days I could walk an hour and only have mild pain in my feet. A lot better than two minutes. On the fourth day I started having small electrical shocks in my right heel. I could only walk for 5 minutes. My left foot was fine, but my right foot would start hurting. The Nalu rep said the wires in my right leg must have moved slightly. On the seventh day the doctor removed the wires. The next day and since then I have missed the stimulators. So, my surgery is scheduled later in May to install the stimulator permanently.

The stimulators allowed me to stand and walk, but I still had the burning sensation in my feet. I had to continue taking the pain medication for the burning, but I can walk again. Potentially, a huge improvement in my quality of life.

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@fredjan2016 Hi Fred, you mentioned on June 14th that your permanent install of the Nalu stimulator was "later in May" but I think you might have meant later in June? Just trying to keep track of this as my wife and I are curious as to how well it works for you after you have it put in. Hope all is well. I hope the wait is not too crazy-making for you, I bet you'll be glad to have this done. When you had the trial you had said that the main benefit was that you could walk more easily but that you still had the burning in your feet. Did you get any reduction in your pain level? Just curious. Look forward to hearing how you do. Best, Hank

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1 reply
billielynne | @billielynne | Jun 29, 2020

I hope you like the stimwave better than I did. I'm having mine taken out. I had it a year ago. I followed rules for 3 mos and got so frustrated that I just quit using it. It advertises wireless. That's a laugh! it may be inside you but you still have to rely on a battery that you have to keep charged. I had everything tested a couple different times.and it showed everything was working ok, but I could not get the antenna to connect to the end of the lead. Rarely could I find the pulse even when I put it on the highest it had.I couldn't keep the battery in the right place. I have a roll around my tummy and when I moved, the battery would move off the end of the terminal. This was the first time I tried to look up reviews. I just hope you have better luck than I did. Perhaps if you are curvy in the right places, it may stay in place. Let me know how you get along with it. I can't offer any advice. I'm having mine removed so that I can possibly have spinal fusion to keep the bones in the right place, L4 and 5.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2020
In reply to @lorirenee1 "@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous..." + (show)
@lorirenee1

@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous life can be, I just microwaved a small glass bowl of glass noodles. And speaking of glass, the glass bowl exploded in my hand when I took it out of the microwave. Shards of glass everywhere, surrounded by 4 curious cats, and 1 five year old grandson, Noah. Here I am, wired inside, battery on my back, surrounded by glass. I literally squatted down on these still strong legs of mine, and cleaned up as best I could. Used my fucked up feet to push glass to my hardwood floors, squatted down, and got the rest up. It was either that, or call my husband to come home from work, and clean up. I thought that might be too long to wait, with glass everywhere. I never bent down. Not to do that with the wires in my back. I squatted. If these wires inside me have not become totally screwed up, it will be a miracle.......just, OH MY GOD!!!!! Love, Lori Renee

Jump to this post

Yikes!!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 29, 2020
In reply to @billielynne "I hope you like the stimwave better than I did. I'm having mine taken out. I..." + (show)
@billielynne

I hope you like the stimwave better than I did. I'm having mine taken out. I had it a year ago. I followed rules for 3 mos and got so frustrated that I just quit using it. It advertises wireless. That's a laugh! it may be inside you but you still have to rely on a battery that you have to keep charged. I had everything tested a couple different times.and it showed everything was working ok, but I could not get the antenna to connect to the end of the lead. Rarely could I find the pulse even when I put it on the highest it had.I couldn't keep the battery in the right place. I have a roll around my tummy and when I moved, the battery would move off the end of the terminal. This was the first time I tried to look up reviews. I just hope you have better luck than I did. Perhaps if you are curvy in the right places, it may stay in place. Let me know how you get along with it. I can't offer any advice. I'm having mine removed so that I can possibly have spinal fusion to keep the bones in the right place, L4 and 5.

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Hi @billielynne, Welcome to Connect. Sorry to hear of your bad experience with the stimwave. Thanks for sharing the experience - it helps others to know it might not work for everyone. Did they offer any explanation why it wasn't working?

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1 reply
lorirenee1 | @lorirenee1 | Jun 29, 2020
In reply to @billielynne "I hope you like the stimwave better than I did. I'm having mine taken out. I..." + (show)
@billielynne

I hope you like the stimwave better than I did. I'm having mine taken out. I had it a year ago. I followed rules for 3 mos and got so frustrated that I just quit using it. It advertises wireless. That's a laugh! it may be inside you but you still have to rely on a battery that you have to keep charged. I had everything tested a couple different times.and it showed everything was working ok, but I could not get the antenna to connect to the end of the lead. Rarely could I find the pulse even when I put it on the highest it had.I couldn't keep the battery in the right place. I have a roll around my tummy and when I moved, the battery would move off the end of the terminal. This was the first time I tried to look up reviews. I just hope you have better luck than I did. Perhaps if you are curvy in the right places, it may stay in place. Let me know how you get along with it. I can't offer any advice. I'm having mine removed so that I can possibly have spinal fusion to keep the bones in the right place, L4 and 5.

Jump to this post

@billielynne I am so sorry for what you have experienced with the Stim wave. There are so many things that can mess up with these stimulators, and believe me, the sellers do not want you to know. I am having the DRG stimulator implanted in me in a few weeks and have not heard any horror stories yet. I only pray that things go well with me. I hope that if you have spinal fusion, it goes well. RESEARCH that, as well!!! Lori Renee

REPLY
3 replies
Hank | @jesfactsmon | Jun 29, 2020
In reply to @lorirenee1 "@billielynne I am so sorry for what you have experienced with the Stim wave. There are..." + (show)
@lorirenee1

@billielynne I am so sorry for what you have experienced with the Stim wave. There are so many things that can mess up with these stimulators, and believe me, the sellers do not want you to know. I am having the DRG stimulator implanted in me in a few weeks and have not heard any horror stories yet. I only pray that things go well with me. I hope that if you have spinal fusion, it goes well. RESEARCH that, as well!!! Lori Renee

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Lori sorry if you already said this before but I am wondering, is there a brand name attached to your drg stimulator? There seem to be several I have heard in conjunction with these peripheral nerve stimulators, like the Nalu that @fredjan2016 is having put in as well as the two others Stimwave and Stimrouter (and maybe others?) but as far as the SCS (spinal cord stimulator) and the drg I do not remember hearing a brand name. The reason I ask is that is a good way to track down reviews or other's previous experiences with something. Hank

REPLY
1 reply
Hank | @jesfactsmon | Jun 29, 2020
In reply to @lorirenee1 "@billielynne I am so sorry for what you have experienced with the Stim wave. There are..." + (show)
@lorirenee1

@billielynne I am so sorry for what you have experienced with the Stim wave. There are so many things that can mess up with these stimulators, and believe me, the sellers do not want you to know. I am having the DRG stimulator implanted in me in a few weeks and have not heard any horror stories yet. I only pray that things go well with me. I hope that if you have spinal fusion, it goes well. RESEARCH that, as well!!! Lori Renee

Jump to this post

By the way, hope you are doing well and are still on track for the July 9th DRG procedure. Also hope you are doing okay considering you had a lot of relief during the trial and are now back in Painville for a while. Best, Hank

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