Peripheral nerve stimulators
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.
Hi, @sparshall – welcome to Mayo Clinic Connect. Thanks for the clarification of exactly what type of device you are (and are not) looking for input on. Confirming this discussion might be on a similar product as what you are referring to? https://connect.mayoclinic.org/discussion/stimwave-user-here/
I do have a peripheral nerve stimulator from Stimwave to deal with chronic pelvic and groin pain.
Interesting to know if you went ahead with Stimwave and what your experience has been like?
I had a stimulator implanted about eight years ago and it was effective right away. It too about 70% of my pain away. Over the years, I have had to have it adjusted many times and I now wonder how well it works today. I am in pain 24/7 and most days, the pain is disabling. I guess that my neuropathic pain is just getting worse as time goes on.
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.
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.
I completed my Nalu peripheral nerve stimulator trial and, in short, it was successful. Immediately after they installed the wires, I was able to walk around the house for over 30 minutes. Over the next three days I could walk an hour and only have mild pain in my feet. A lot better than two minutes. On the fourth day I started having small electrical shocks in my right heel. I could only walk for 5 minutes. My left foot was fine, but my right foot would start hurting. The Nalu rep said the wires in my right leg must have moved slightly. On the seventh day the doctor removed the wires. The next day and since then I have missed the stimulators. So, my surgery is scheduled later in May to install the stimulator permanently.
The stimulators allowed me to stand and walk, but I still had the burning sensation in my feet. I had to continue taking the pain medication for the burning, but I can walk again. Potentially, a huge improvement in my quality of life.
I had a Burst DR spinal cord stimulator implant in June of '15. Recovery from the implant was no big deal. Setting the stimulation started as soon as the scar tissue healed. My goodness!! I had forgotten what (almost) pain free felt like. I could walk without pain.
The "wonderful" phase lasted for 2 years, when the pain gradually increased, and the Abbott rep recalibrated the controller, and it was good again.
—-This was the pattern for the next 2 years – adjusting it every 3 months.
I'm at church now – first time for 14 weeks. I'll write more later.
Fred, my wife Linda and I are planning to follow your updates very closely. As also Lori's @lorirenee1 progress with her dorsal root ganglion nerve stimulator. We (me mostly) are pretty excited about the possibilities one of these new implants could open up for improved functionality in her life if she can gain a significant reduction in her pain level. Linda is more cautious and skeptical, but with positive reports from you guys I think she might become closer to being convinced to move forward. I wish you good luck with the upcoming surgery and hope this new Nalu stimulator becomes a permanent benefit to you for an improved way of life. All our best, Hank
Reply continued. Toward the beginning of year 5, the adjustments had less and less effect, and in March I turned it off for a month. I could tell no difference to my pain, on or off. Now I'm waiting to see a neurospecialist to see if there's anything to be done, and if not, we'll be discussing the DRG stimulator (dorsal root ganglion), which can target more specifically the affected nerves.
@fredjan2016 Well, this is some incredible news!! So happy for you.