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 | 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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@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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3 replies
lorirenee1 | @lorirenee1 | Dec 9, 2020
In reply to @faithwalker007 "As for connection to the leads, your type of connections and type of battery of your..." + (show)
@faithwalker007

As for connection to the leads, your type of connections and type of battery of your stimulator is up to your surgeon and provider.

You can have various types of both. Connected leads Wi-Fi leads rechargeable batteries standard interchangeable batteries.

It all depends on the type of leads used, output and expected programs utilized, and foreseeable changes in disease state. These factors will affect the selection process.

I was diagnosed with progressing CRPS Type 2 with high interchanging evolving nerve pain which was not manageable with conventional pain medications.

I don’t know or need to know y’all’s diagnoses but I hope I’m being clear here. The pain doctors are passing SCSs because they are not opioid. However that does NOT mean everyone with Chronic Pain is a candidate for one.

I spoke to my psychologist last week and he is finding cases when people are receiving a SCS WITHOUT the mandatory pre-psych evaluation. You must have this BEFORE the trial. Why? The trial is not the same as the implant as many if not most discover. Is the pain neurological or contributed to by other causes or made worse or impeded by other issues including psychological ones that will complicate the usage of a SCS?

This mandatory psych eval is vital to the success and prevention of improper use of risky, expensive, time-consuming, frustrating therapy that can lead to dangerous if not life-threatening consequences.

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@faithwalker Renee, My goodness, girl; thanks for all you write about these stimulators, and for clarifying info about the leads. You clarify information very well, and I so appreciate that. I cannot imagine doing a pain stimulator without a psych evaluation, as the whole experience is grueling. It is not for an unstable, very nervous, clinically depressed person to handle. My pain doc did explain why the psych eval was so essential, and I did appreciate that. I have gone through Hell with this device, and I know that a state of clinical depression would have made it that much worse. Thanks a bunch! LoriRenee1

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1 reply
lorirenee1 | @lorirenee1 | Dec 9, 2020
In reply to @faithwalker007 "I’m not sure they used the wrong leads or programmed your stimulator only to where you..." + (show)
@faithwalker007

I’m not sure they used the wrong leads or programmed your stimulator only to where you have to adjust it? Or maybe your Continuous was programmed while you were still inflamed and you couldn’t reduce it far enough when the inflammation subsided...
Lots of factors

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@faithwalker Hi Renee, Could you tell me what "Shock" and "Continuous" even mean in terms of the DRG stimulator? God, I do not know much about my programming. I only know that I have been given 4 programs since my implant in July. I go to my Pain Doc, and the ABBOTT rep is there at the same time. The ABBOTT guy generally adjusts one lead at a time to a point where I no longer feel electric impulses, and then tends to lower it down more, at least 2 notches. I then go home and see how it feels, and find myself lowering and lowering the electricity, one notch at a time. I live with my adjustment a few days, and within the last month, could not seem to get rid of electric sensations in my butt cheeks and shins, primarily. It got to a point that I could not sit down, and shut it off completely. The whole experience has been grueling, but I too, have about 20-30% pain relief, for sure. So far, with the machine off, the pain relief continues. It just got to a point that I could not tolerate the electric sensations. Fun, fun. I would not wish this on my worst enemy, of which I have none. Thanks again, Renee. LoriRenee1

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | 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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Absolutely! My pain specialist would not let any other surgeon or provider do it! If anyone ANYONE else attempts to schedule surgery TO YOUR SPINE and they are NOT a neurosurgeon, report them to the AMA!

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steeldove | @steeldove | 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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@lorirenee1 @sunnyflower @spinrosa64 @faithwalker007 At Mayo Clinic SCS trials and implants are handled by specially trained doctors in the Department of Pain Medicine, not by neurosurgeons. Perhaps in smaller hospitals neurosurgeons perform the procedure.

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Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020
In reply to @sprinrosa64 "Wow Renee your info is so complete and I am sure very helpful for people. I..." + (show)
@sprinrosa64

Wow Renee your info is so complete and I am sure very helpful for people. I feel so silly when I read what so many people are going thru compared to my pain. The STEMWAVE PNS system that I will be getting, hopefully in a week or so, is 2 leads set around the femoral nerve in my thigh , with a EXTERIOR battery worn on my thigh and a remote control I can carry in my pocket. I get 3 batteries so I can always have back up charged.I wish you all well and keep searching there are answers out there PEACE

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Nice! I will pray for a successful implant and treatment. You sound hopeful and should be.

I did a LOT of research before even embarking on the the trial of the DRG SCS. After being emerged in healthcare for 20 years at that point, I knew and still do, how to read and understand studies.

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Faithwalker007 (Renee) | @faithwalker007 | 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.

Jump to this post

You are not to blame. At least you had a specialist. I’m afraid many are succumbing to pcp attempting this procedure due to the crackdown on Opioids. The equipment should not be accessible to any other surgeons except neurosurgeons or back surgeons. IMO

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Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020
In reply to @lorirenee1 "@faithwalker Renee, My goodness, girl; thanks for all you write about these stimulators, and for clarifying..." + (show)
@lorirenee1

@faithwalker Renee, My goodness, girl; thanks for all you write about these stimulators, and for clarifying info about the leads. You clarify information very well, and I so appreciate that. I cannot imagine doing a pain stimulator without a psych evaluation, as the whole experience is grueling. It is not for an unstable, very nervous, clinically depressed person to handle. My pain doc did explain why the psych eval was so essential, and I did appreciate that. I have gone through Hell with this device, and I know that a state of clinical depression would have made it that much worse. Thanks a bunch! LoriRenee1

Jump to this post

I only want people to know what I made myself know through RESEARCH. Lol
My CRPS pain is compounded by migraines, osteoarthritis, IBD, and other fun stuff including secondary depression that a SCS will not miraculously FIX.
I’m sure I’m not the only person with neurological pain with these issues and a SCS is not the cure all for our troubles nor should it be expected to be.
However, it is being promoted that way in many cases. “Oh you don’t need to take opioids, I have an alternative for you.” Its been said to me three times since I’ve had it implanted BEFORE these pain specialists bother to read my chart and when they become aware I have the DRG implanted and it is only carrying 15% (max) of my pain load, they say goodbye.

This therapy is NOT an cure for government’s Opioid dilemma. It is simply another treatment for intractable peripheral nerve pain which is not responding to any other therapy.

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Dec 9, 2020
In reply to @lorirenee1 "@faithwalker Hi Renee, Could you tell me what "Shock" and "Continuous" even mean in terms of..." + (show)
@lorirenee1

@faithwalker Hi Renee, Could you tell me what "Shock" and "Continuous" even mean in terms of the DRG stimulator? God, I do not know much about my programming. I only know that I have been given 4 programs since my implant in July. I go to my Pain Doc, and the ABBOTT rep is there at the same time. The ABBOTT guy generally adjusts one lead at a time to a point where I no longer feel electric impulses, and then tends to lower it down more, at least 2 notches. I then go home and see how it feels, and find myself lowering and lowering the electricity, one notch at a time. I live with my adjustment a few days, and within the last month, could not seem to get rid of electric sensations in my butt cheeks and shins, primarily. It got to a point that I could not sit down, and shut it off completely. The whole experience has been grueling, but I too, have about 20-30% pain relief, for sure. So far, with the machine off, the pain relief continues. It just got to a point that I could not tolerate the electric sensations. Fun, fun. I would not wish this on my worst enemy, of which I have none. Thanks again, Renee. LoriRenee1

Jump to this post

“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.

REPLY
2 replies
Faithwalker007 (Renee) | @faithwalker007 | 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.

Jump to this post

Tell your rep that you do not understand the programming options. Tell him what is happening at home and that the programs are too intense and you think your body position is affecting it when he programs your system.
Ask him to TEACH you how to use your control system better so you can understand how to adjust your Stimulator and not merely shut it off.

Do you still have any inflammation in your back?

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