Peripheral nerve stimulators

What do you after it doesn't work anymore after 7 months?

Going to have a stimwave for pelvic pain Dec 9 at emory in atlanta. Would like to know if it helped your pain and what was the name of the company that installed it

I would also like to know if there are any good NALU stories since I am considering the 2-wk trial. I have pudendal neuropathy (MUCH pain when sitting), most likely caused by riding my bicycle too much.

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

What do you after it doesn't work anymore after 7 months?

I just finished a NALU PNS trial in Calif with a Dr Ramana Naidu. It was an excellent experience in most ways but unfortunately PNS did not work for me . I chose Nalu because the literature that I could see and word of mouth seemed to suggest NALU being the best. However there are no independent studies out yet on these expensive devices …the studies out, are all ones done by the company themselves as part of their R+D. I had heard by word of mouth that Stimwave had a few problems . Couldn’t find any anecdotal evidence for NALU but through a few webinars and things ,it seemed to me to be the one to try. It’s design is the best in my opinion too …including that you can trial it for a week just like you can an SCS device. Expense wise this is good because I am a self pay living in Canada , so I have no coverage . I already had to pay for 2 DRG experiences …one trial with implant , then when that stopped working , another trial . A huge amount of my retirement savings went on this ( I’m 62..it happened when I was 51.)
The Nalu trial procedure was simple , I had excellent follow up and frequent adjustments by the company rep during the trial …it just didn’t help.
I went to Dr Naidu as when I looked into the world of PNS his name kept coming up and he is very approachable . He was convinced NALU was the right thing for me to try and when I looked into it , I agreed. He is friendly , knowledgeable, seems to listen to understand your situation and is technically excellent.
I just got home 3 days ago after a 10 day trial. It’s very slick technology . Unfortunately, from a peripheral therapy point of view , I’m sort of at the end of the line and don’t know what I’ll do next . Give up or keep looking ?
. Local anesthetic works like magic …you would think there would be something out there that could block a nerve's signal in the same way a local anesthetic does , but without the need for injections of a chemical that scars the tissues eventually .
If anyone has any connection with ideas along these lines , let me know . I am looking for a peripheral physical intervention that mimics local anesthetic. ( for the purposes of this discussion.)
I am very aware and have been involved with the huge world of chronic pain theories around neuroplasticity and centralization …that is not for this discussion . I have one very accessible nerve in my thigh causing the problem.
I’m looking for something that doesn’t involve surgery ,RF, temperature high or low , saline , sugar , ketamine , etc etc . I need something that mimics how local anesthetics work thats doesn’t damage tissue .
I would appreciate if anyone has any ideas along these lines. I’m also happy to answer questions about my experience. I’ll try to be better at replying to this forum .

I suffered and my life slipped away again , hasn’t returned yet after 7 years . I had a repeat DRG trial and it failed too …my nerves got irritated to electricity. Just recently tried the NALU PNS….failed too …my nerves just don’t like electricity now. So incredibly frustrating because I get 90% pain relief with a little bit of local anesthetic, and yet I’ve been trying everything for 11 years since it happened. My quality of life is very low …the one thing I really have left is my wife and 2 kids , I live for them . There must a solution out there to turn off a specific peripheral nerve . It would literally save my life because my current lifestyle is going to take me prematurely. I know because I am a physician ..or was before this happened .

I'm with a sore lower back and pain in my toes. But, nothing like you are going through. I hope the medical society can come up with something that can help. In the meantime, you are in my prayers.