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.

Hank | @jesfactsmon | Jun 14, 2020
In reply to @sparshall "Hi, Cronulla, I ended up getting a Nalu PNS device, which has been available in the..." + (show)
@sparshall

Hi, Cronulla,
I ended up getting a Nalu PNS device, which has been available in the US since June. Doctors rave about its advanced technology and say it’s much better than Stimwave. My implant was done on Feb 7 and the device was activated two weeks later. Unfortunately, some major mistakes were made. The system uses a tiny implanted receiver that’s placed just under the skin and takes “orders” from a therapy disk on the outside of the body. The doctor placed my implant in a spot where it can’t communicate well with the therapy disk. Now I need a second procedure — a much simpler one — to move the implant two or three inches away from where it is now. At the same time the doctor made this mistake, the clinician from the company made errors in programming the two therapy disks, and they malfunctioned from the start. A diagnostics program proved that I was describing the malfunctions accurately — in fact, it was much worse than I said. Now the disks and the remote control are in the hands of an engineer and I’m waiting for a date for my corrective procedure. All this took place over the past week, and I am absolutely worn out from stress and frustration. But I know from the brief periods it actually worked that it does WORK. It blotted out the awful nerve pain I’ve suffered since my widespread pelvic/sacrum fractures five years ago. I think I would have been happy with Stimwave, because the trial was perfect. I expect to be happy with the Nalu device once it’s working properly. The mistakes were made by people and do not reflect on the device itself. There are things about it I don’t like, but that’s true of Stimwave too. The biggest problem with Stimwave is finding a way to attach the rather large external battery pad to the body. For me, it would have to be in the middle of my back, and there’s no way I can attach it or remove it myself. During the trial, my husband had to handle it. Although I dislike the Nalu therapy disks, the advantage is that they can be placed anywhere — as long as the doctor puts the little internal receiver in the correct place! So to manage pain in the rear and bottom of my pelvis, I can wear a disk on my side, where I can see it and put it on and take it off myself. I am beyond frustrated by the people errors but very hopeful about getting substantial relief once the mistakes are corrected.

Sandy

Jump to this post

Sandy, I appreciate your telling about the bad experience you have had so far with mistakes in the implementation of the Nalu product. I and my wife, who has bad foot neuropathy, are awaiting the results of both @fredjan2016 and @lorirenee1 both of whom have recently had stimulators inserted, and I will add you to the people that we will want to follow closely the progress of. We hope for your sake as well as our own that you ultimately have a very successful outcome with this. I am so sorry to hear about your travails with this new device. Hopefully these devices will start to become generally successful and as they install more of them they will become a lot more proficient at it and there won't be issues such as you have been having too often. I must say that I admire your courage in going through all of this. You and all of the pain sufferers whose posts I read seem VERY brave! Best of luck and anything you can post in the way of progress will be most appreciated. Thanks, Hank B.

REPLY
fredjan2016 | @fredjan2016 | Jun 15, 2020

@sparshall Sandy, I read your post on March 1st about the issue you had with the Nalu stimulator. What was the final outcome? Did you have the Nalu stimulator removed?

REPLY
wilcy | @wilcy | Jun 15, 2020

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

REPLY
4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 15, 2020
In reply to @wilcy "Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any..." + (show)
@wilcy

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

Jump to this post

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?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 15, 2020
In reply to @wilcy "Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any..." + (show)
@wilcy

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

Jump to this post

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/

REPLY
1 reply
Hank | @jesfactsmon | Jun 16, 2020
In reply to @johnbishop "Hi @wilcy, It sounds like the Medtronic stimulator is really helping with the pain. There are..." + (show)
@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/

Jump to this post

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

REPLY
1 reply
Hank | @jesfactsmon | Jun 16, 2020
In reply to @wilcy "Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any..." + (show)
@wilcy

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

Jump to this post

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

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 16, 2020
In reply to @wilcy "Had my permanent Medtronic stimulator installed 3 weeks ago ! Not 100% but worth it! Any..." + (show)
@wilcy

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

Jump to this post

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

REPLY
lorirenee1 | @lorirenee1 | Jun 16, 2020
In reply to @jesfactsmon "Hi John @johnbishop thanks for the link to the other discussion on nerve stimulators. Lori @lorirenee1..." + (show)
@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

Jump to this post

@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

REPLY
1 reply
Hank | @jesfactsmon | Jun 16, 2020
In reply to @lorirenee1 "@jesfactsmon Hank, thanks so much for info on @cbrackle. You are so kind. I am not..." + (show)
@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

Jump to this post

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.)

REPLY
View MoreView Less
Please sign in or register to post a reply.