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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Nov 19, 2020
In reply to @texasaviatrix "I am also looking for people who have had the Stimwave implant. I had a Nevro..." + (show)
@texasaviatrix

I am also looking for people who have had the Stimwave implant. I had a Nevro spinal cord stimulator implanted 4 years ago and it has been completely useless! The company reps are very nice (although they change frequently) and diligent about trying new programs, but with no success. I’ve suffered from severe lower back and hip pain since 2003, when I was (apparently) dropped in a hospital under anesthesia. I woke up with my tailbone snapped off at the sacrum and shoved up into my body. The pain was excruciating. 5 months later, the tailbone was removed by a neurosurgeon and I got immediate relief. But a few days later, I started experiencing this other pain that no one seems to know how to fix. It’s been diagnosed as SI joint dysfunction, dislocated pelvic bone, entrapped cluneal nerve, etc. but no one seems to know how to help it. I had a morphine pump for 8 years, which did help, but the side effects were terrible...severe brain fog, short term memory loss and occasional black outs. It was replaced by the Nevro spinal cord stimulator, which has been useless. I’ve also had dozens of SI joint injections over the years, various nerve ablations, chiropractics and Accupuncture. My only temporary relief comes from opioids, but doctors are getting very reluctant to prescribe them. My current doctor is the second to inform me that he will no longer prescribe them and that I need to find another doctor. I am very fearful for the future. Was hoping that Stimwave might be the answer, but now I’m not so sure.

Jump to this post

Hello @texasaviatrix, Welcome to Mayo Clinic Connect. There are a couple of other discussions that you may find more helpful.

- Stimwave user here: https://connect.mayoclinic.org/discussion/stimwave-user-here/
- Comparison of Spinal Cord Stimulators from Boston Sci., Nevro: https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/

Have you tried any alternative treatments or therapy like Myofascial Release Therapy? -- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
lorirenee1 | @lorirenee1 | Nov 20, 2020
In reply to @texasaviatrix "I am also looking for people who have had the Stimwave implant. I had a Nevro..." + (show)
@texasaviatrix

I am also looking for people who have had the Stimwave implant. I had a Nevro spinal cord stimulator implanted 4 years ago and it has been completely useless! The company reps are very nice (although they change frequently) and diligent about trying new programs, but with no success. I’ve suffered from severe lower back and hip pain since 2003, when I was (apparently) dropped in a hospital under anesthesia. I woke up with my tailbone snapped off at the sacrum and shoved up into my body. The pain was excruciating. 5 months later, the tailbone was removed by a neurosurgeon and I got immediate relief. But a few days later, I started experiencing this other pain that no one seems to know how to fix. It’s been diagnosed as SI joint dysfunction, dislocated pelvic bone, entrapped cluneal nerve, etc. but no one seems to know how to help it. I had a morphine pump for 8 years, which did help, but the side effects were terrible...severe brain fog, short term memory loss and occasional black outs. It was replaced by the Nevro spinal cord stimulator, which has been useless. I’ve also had dozens of SI joint injections over the years, various nerve ablations, chiropractics and Accupuncture. My only temporary relief comes from opioids, but doctors are getting very reluctant to prescribe them. My current doctor is the second to inform me that he will no longer prescribe them and that I need to find another doctor. I am very fearful for the future. Was hoping that Stimwave might be the answer, but now I’m not so sure.

Jump to this post

@texasaviatrix I had a DRG stimulator implanted in me about 4 months ago, and it barely does anything helpful at all. Pretty useless. I would suggest that you google "Stimwave blogs" to perhaps find real people who have it, and what their experience has been. By the way, I get Nevro Spinal Cord stimulator advertisements on my facebook page, and literally, easily 100 people have written negative reviews about their stimulator. Utterly terrible reviews with horrific descriptions of their condition due to the Nevro. I think Nevro advertises because if they get 1 or 2 people to use it, then their mission is accomplished. For what it is worth, I have a feeling that ALL of these devices only help very few people, and sometimes help for awhile, and stop working. Be very careful and research from real people, not advertisements. Also, research Kratom. It is a leaf from a SE Asian tree that really helps nerve pain. Message me if you want to know more. I have read what you are going through, and it is horrific. I am just so sorry. LoriRenee1

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 20, 2020
In reply to @lorirenee1 "@texasaviatrix I had a DRG stimulator implanted in me about 4 months ago, and it barely..." + (show)
@lorirenee1

@texasaviatrix I had a DRG stimulator implanted in me about 4 months ago, and it barely does anything helpful at all. Pretty useless. I would suggest that you google "Stimwave blogs" to perhaps find real people who have it, and what their experience has been. By the way, I get Nevro Spinal Cord stimulator advertisements on my facebook page, and literally, easily 100 people have written negative reviews about their stimulator. Utterly terrible reviews with horrific descriptions of their condition due to the Nevro. I think Nevro advertises because if they get 1 or 2 people to use it, then their mission is accomplished. For what it is worth, I have a feeling that ALL of these devices only help very few people, and sometimes help for awhile, and stop working. Be very careful and research from real people, not advertisements. Also, research Kratom. It is a leaf from a SE Asian tree that really helps nerve pain. Message me if you want to know more. I have read what you are going through, and it is horrific. I am just so sorry. LoriRenee1

Jump to this post

@lorirenee1 Lori. I am so sorry about the outcome of the DRG unit and thanks for warning others.

REPLY
1 reply
lorirenee1 | @lorirenee1 | Nov 20, 2020
In reply to @bustrbrwn22 "@lorirenee1 Lori. I am so sorry about the outcome of the DRG unit and thanks for..." + (show)
@bustrbrwn22

@lorirenee1 Lori. I am so sorry about the outcome of the DRG unit and thanks for warning others.

Jump to this post

Thanks, Jenny. I feel that at least if I can help someone else, this illness won't be totally for nothing. Gotta help others. LoriRenee

REPLY
2 replies
sunnyflower | @sunnyflower | Nov 20, 2020
In reply to @lorirenee1 "Thanks, Jenny. I feel that at least if I can help someone else, this illness won't..." + (show)
@lorirenee1

Thanks, Jenny. I feel that at least if I can help someone else, this illness won't be totally for nothing. Gotta help others. LoriRenee

Jump to this post

That's what it's about for sure Lori and Jen! @bustrbrwn22 Hope it's a good weekend goils. Try to behave! xoxoxox

REPLY
Hank | @jesfactsmon | Nov 20, 2020
In reply to @texasaviatrix "I am also looking for people who have had the Stimwave implant. I had a Nevro..." + (show)
@texasaviatrix

I am also looking for people who have had the Stimwave implant. I had a Nevro spinal cord stimulator implanted 4 years ago and it has been completely useless! The company reps are very nice (although they change frequently) and diligent about trying new programs, but with no success. I’ve suffered from severe lower back and hip pain since 2003, when I was (apparently) dropped in a hospital under anesthesia. I woke up with my tailbone snapped off at the sacrum and shoved up into my body. The pain was excruciating. 5 months later, the tailbone was removed by a neurosurgeon and I got immediate relief. But a few days later, I started experiencing this other pain that no one seems to know how to fix. It’s been diagnosed as SI joint dysfunction, dislocated pelvic bone, entrapped cluneal nerve, etc. but no one seems to know how to help it. I had a morphine pump for 8 years, which did help, but the side effects were terrible...severe brain fog, short term memory loss and occasional black outs. It was replaced by the Nevro spinal cord stimulator, which has been useless. I’ve also had dozens of SI joint injections over the years, various nerve ablations, chiropractics and Accupuncture. My only temporary relief comes from opioids, but doctors are getting very reluctant to prescribe them. My current doctor is the second to inform me that he will no longer prescribe them and that I need to find another doctor. I am very fearful for the future. Was hoping that Stimwave might be the answer, but now I’m not so sure.

Jump to this post

@texasaviatrix
I am so horrified at what happened to you in the hospital in Texas! My god, I can't believe even a halfway decent lawyer couldn't have gotten a pretty good settlement for you. Ugh, such incompetence by the medical staff!

Just wondering, your Mayo name sounds like you fly airplanes. Are you still doing it or was that before the horrendous injury? If you are still flying I am in even more awe of you. 😲

Best to you, Hank

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 21, 2020
In reply to @lorirenee1 "Thanks, Jenny. I feel that at least if I can help someone else, this illness won't..." + (show)
@lorirenee1

Thanks, Jenny. I feel that at least if I can help someone else, this illness won't be totally for nothing. Gotta help others. LoriRenee

Jump to this post

@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.

REPLY
2 replies
woogie | @woogie | Nov 21, 2020

No, I do not have an implant; however, I have pain down my leg because of my severe spinal stenosis. I have several issues with my spine and recently I fell and fractured a bone in my neck. Actually, it is a bone attached to my neck bone, I wouldn't be here writing this, if it were actually the C4. I wouln't be here writing this, I would be in a neck brace, not typing, I would imagine.

REPLY
texasaviatrix | @texasaviatrix | Nov 21, 2020
In reply to @jesfactsmon "@texasaviatrix I am so horrified at what happened to you in the hospital in Texas! My..." + (show)
@jesfactsmon

@texasaviatrix
I am so horrified at what happened to you in the hospital in Texas! My god, I can't believe even a halfway decent lawyer couldn't have gotten a pretty good settlement for you. Ugh, such incompetence by the medical staff!

Just wondering, your Mayo name sounds like you fly airplanes. Are you still doing it or was that before the horrendous injury? If you are still flying I am in even more awe of you. 😲

Best to you, Hank

Jump to this post

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.

REPLY
3 replies
lorirenee1 | @lorirenee1 | Nov 21, 2020
In reply to @bustrbrwn22 "@lorirenee1 @sunnyflower you are both saints. I am still in the all about me part of..." + (show)
@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.

Jump to this post

@bustrbrwn22 I am often in the "all about me" pain journey, especially when totally despairing when the pain is very severe. How can a person have very severe pain, and NOT be, "all about me." You'd have to be a piece of furniture, or something. If you have a good husband, hang on for life. He loves you as you are, Jenny. I am sure of it. LoriRenee1

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