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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Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020

The issue is that outside of the Mayo Clinic, this high risk procedure is being done by less than qualified if not untrained providers. My psychologist is being called on AFTER trials to do evals.

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sunnyflower | @sunnyflower | Dec 9, 2020
In reply to @jesfactsmon "@sunnyflower @faithwalker007 Sunny I agree with you. Renee is providing some extremely useful info, a lot..." + (show)
@jesfactsmon

@sunnyflower @faithwalker007
Sunny I agree with you. Renee is providing some extremely useful info, a lot of which I do not get the feeling everyone who receives these implants get. Maybe they are told some of this but perhaps some of it whizzes right past their heads. One BIG item is that from what I gather, many/most who receive these devices are not told (or don't hear) that the trial version is likely to give better pain relief than the permanent version. If this is not being told as well as emphasized that sounds like malpractice. Who would not want to know this up front, even before the trial? I know that it was a surprise to Lori @lorirenee1

I do think I heard a couple people describe their stimulators as a success, similar to Renee. Partly I think it's a matter of not expecting too much from them. One was @fredjan2016 who said it did not relieve pain as much as it helped him to stand up for longer periods (if I am remembering correctly). There was someone else, a lady, who also mentioned her unit as being an unqualified success, I believe she had what she referred to as an SCS. But I agree with Sunny, most of the stories I have heard people tell amount to what sound like failures.

Renee, I know you already know this, but I'll say it again, you are a fount of knowledge and experience, and an excellent explainer of same. What a service you do here for people! Best, Hank

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Amen and ditto! Thanks so much Renee and Hank! @faithwalker007

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sunnyflower | @sunnyflower | Dec 9, 2020
In reply to @faithwalker007 "Thanks. It’s not exactly the way I’d ever intended to use my knowledge. It’s more experience-driven..." + (show)
@faithwalker007

Thanks. It’s not exactly the way I’d ever intended to use my knowledge. It’s more experience-driven research and medical opinions before launching in the journey myself.
My pharmacy experience and medical career in pharmacy simply adds to it.
I’m grateful I’m still able to help those in the same shoes I now painfully tread.

By no means do I count my DRG SCS a success but it may one day get there. I’m willing to wait and work to hopefully get there.

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Renee, I sincerely hope and pray that you do get there sooner rather than later!! Blessings, Sunny @jesfactsmon

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sunnyflower | @sunnyflower | Dec 9, 2020
In reply to @sprinrosa64 "I have been told by family members who are in health field for years that YOU..." + (show)
@sprinrosa64

I have been told by family members who are in health field for years that YOU DEMAND THAT A NEUROSURGEON DOES THE IMPLANT, to many pain managment doctors are doing these surgeries. I SHOULD SAY THIS APPLIES IF YOUR IMPLANT IS BEING USED ON YOUR SPINE . BEST OF LUCK

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Working in healthcare over 20 years and being a patient for so many years, I concur, it should be a Neurosurgeon who implants these. I believe in specialty! So if at all possible, ask for that. You deserve it!

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sunnyflower | @sunnyflower | Dec 9, 2020
In reply to @lorirenee1 "@sunnyflower @sprinrosa64 The doctor that did my DRG implant is a Pain Doctor and Anesthesiologist. It..." + (show)
@lorirenee1

@sunnyflower @sprinrosa64 The doctor that did my DRG implant is a Pain Doctor and Anesthesiologist. It is very common in Illinois that pain doctors do these implant procedures. I never even thought to ask for a neurosurgeon to implant my device. I didn't think to ask many important questions, and sadly trusted just my pain doc as to the device. Too late, smart.

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Well, if you decide you want to give it another try, you can try to get a neurolosurgeon to remove or replace or reposition your current device. Specialists specialize just like ortho docs (shoulders, knees, etc.), or attorneys (real-estate, family, business law etc.), so there might be a Neurosurgeon who specializes in this. That would be ideal. Anestheologists do work on spines such as injestions. Not all of them though. But if it were me, I would find a Neurosurgeon who specializes in implanting these. Ideally that would be the best option. No judgment here. All the best, Sunnyflower @sprinrosa64

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020
In reply to @sunnyflower "Well, if you decide you want to give it another try, you can try to get..." + (show)
@sunnyflower

Well, if you decide you want to give it another try, you can try to get a neurolosurgeon to remove or replace or reposition your current device. Specialists specialize just like ortho docs (shoulders, knees, etc.), or attorneys (real-estate, family, business law etc.), so there might be a Neurosurgeon who specializes in this. That would be ideal. Anestheologists do work on spines such as injestions. Not all of them though. But if it were me, I would find a Neurosurgeon who specializes in implanting these. Ideally that would be the best option. No judgment here. All the best, Sunnyflower @sprinrosa64

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I had the neurosurgeon that invented the Abbott Paddle lead implant mine. He has recently relocated to Cheyenne. Of course he had the bedside manner of a thug but at least he corrected my diagnosis to Type 2 and knew what he was doing.

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1 reply
sprinrosa64 | @sprinrosa64 | Dec 9, 2020
In reply to @faithwalker007 "I had the neurosurgeon that invented the Abbott Paddle lead implant mine. He has recently relocated..." + (show)
@faithwalker007

I had the neurosurgeon that invented the Abbott Paddle lead implant mine. He has recently relocated to Cheyenne. Of course he had the bedside manner of a thug but at least he corrected my diagnosis to Type 2 and knew what he was doing.

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Lol , a thug , thanks for the laugh. Seeing more doctors in the past 2 yrs than I ever care to really get to see every kind. Some are so blessed, others well

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lorirenee1 | @lorirenee1 | Dec 9, 2020
In reply to @faithwalker007 "“Shock” programming (my term) is the program you can FEEL after he is finished programming it...." + (show)
@faithwalker007

“Shock” programming (my term) is the program you can FEEL after he is finished programming it. If you adjust it upwards or downwards, it is programmed to treat your pain with sensation of electrical impulses similar to a TENS UNIT.

“Continuous” (DRG term) programming is NOT EVER supposed to be felt after he is finished programming. If you increase the setting, you STOP and decrease of you FEEL electrical impulses Anywhere.

How are you sitting, or laying when you are being programmed? Stand when he is programming you if you move about at home. Lay flat if you lie down a lot at home.

Your position when he programs affects the intensity of the settings of every program he is formulating in your system.

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@faithwalker Renee, Oh my goodness! Thanks for your suggestions. My DRG definitely has continuous programming, BUT the ABBOTT guy always sets it when I am standing. It is when I am sitting, or laying down, that I have problems!!!! He obviously needs to set when I lay down!!! And I spend most of my time either sitting or laying. Why didn't the ABBOTT guy think of this? I have told him many times that I am ok when I walk, but I feel electricity sitting or laying. Man, you have more sense than my ABBOTT guy. We as patients, don' know, what we don't know!!!! I swear, girl, you should get paid for your knowledge!!!! As far as inflammation in my back, I would assume I have it, because the pain when sitting got too intense to sit down. Electric butt!! I will insist on a SED rate to measure inflammation, and have the stimulator programmed laying down. God Bless you, Renee.

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020
In reply to @lorirenee1 "@faithwalker Renee, Oh my goodness! Thanks for your suggestions. My DRG definitely has continuous programming, BUT..." + (show)
@lorirenee1

@faithwalker Renee, Oh my goodness! Thanks for your suggestions. My DRG definitely has continuous programming, BUT the ABBOTT guy always sets it when I am standing. It is when I am sitting, or laying down, that I have problems!!!! He obviously needs to set when I lay down!!! And I spend most of my time either sitting or laying. Why didn't the ABBOTT guy think of this? I have told him many times that I am ok when I walk, but I feel electricity sitting or laying. Man, you have more sense than my ABBOTT guy. We as patients, don' know, what we don't know!!!! I swear, girl, you should get paid for your knowledge!!!! As far as inflammation in my back, I would assume I have it, because the pain when sitting got too intense to sit down. Electric butt!! I will insist on a SED rate to measure inflammation, and have the stimulator programmed laying down. God Bless you, Renee.

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I would if I could guarantee my knowledge would never hurt someone. I was paid for it, remember? Lol

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020
In reply to @faithwalker007 "I would if I could guarantee my knowledge would never hurt someone. I was paid for..." + (show)
@faithwalker007

I would if I could guarantee my knowledge would never hurt someone. I was paid for it, remember? Lol

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Now I simply impart my experience and knowledge to those I can help WHEN I can help them SAFELY. I would never work with it and take an wage because with the medication I take I risk harming that person. And I could NEVER live with myself if that happened. And no person or company would either.

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