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sparshall (@sparshall)

Peripheral nerve stimulators

Neuropathy | Last Active: Feb 18 4:20pm | Replies (208)

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@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

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Replies to "Hi, Cronulla, I ended up getting a Nalu PNS device, which has been available in the..."

@sparshall

Doctors are every bit as human as any of us, Sandy, though there are the few who think that they're God. It's surely unfortunate that you experienced their errors. I hope everything gets straightened out soom so you can start feeling the pain relief. I did a lot of waiting before my scs was implanted and turned on.

I imagine, too, that mistakes are made more often when the device is new, until the doctors and company reps have some experience with it.

Jim

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.