Nevro HF10 “Overstimulation” - anyone else experience this?
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I’ve recently had a trial and then permanent implantation of the Nevro HF10 spinal cord stimulator (SCS). I received the paddle lead variation rather than the percutaneous variation, for those who know that difference. On the plus side, I have already found settings that have given me 80% pain reduction so I am happy with my decision. I still need to do further work and experimentation, though, to find levels that allow reduction of pain med levels.
My question for others who have had permanent implants - have you experienced what the techs call “overstimulation?” It happens in certain programs when you try to go to higher power levels. Three things happen (at least for me): (1) my pain reduction is cancelled out; (2) sometimes my pre-existing pain areas are actually amplified in pain rather than reduced; and (3) I feel what I would call “phantom pains,” meaning pains in areas that were previously free of pain, such as a sensation of sciatica in my “good leg” that has never had sciatica.
Anyone else experience this? I can eliminate it by lowering the power of the device but I’m just curious - what was your experience and what were you told about it by doctors and SCS techs?
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allaroundanne Seafarer123
Posted
Oh boy have I experienced this- to the point that the machine has been rendered useless. Mine is in my neck and so I have the leads, not paddles. I had a great trial, of course, doesn't everyone? LOL... Then came the permanent implant. I have a St. Jude down below and so it was very disconcerting to not be able to know where the thing was stimulating. I ended up turning it up too high because I just wasn't getting enough pain relief and it gave me some awesome spasms in my trapezius. I had no idea that the traps were so tight because of the machine, the reps never mentioned that their precious little machine might be causing it so they actually let me undergo trigger point injections in my spasmed trapezius rather than admit that the Nervo was to blame. I finally decided to see what would happen if I turned it off. I felt better. When I told the doc this he said the company didn't want to do it for everyone, but they can reduce the amplitude and they can also run a continuous or a pulse program of this lower amplitude. So, I am trying out this "special" version of the Nevro this week to see if I can recover anything out of this thing or not. I ran into some trouble yesterday, I had pushed it up too far, I got into spasms and once that happens I just have to shut it all down and wait to try again in a few days. I did have some pain relief at the low amplitude, at a continuous delivery.
Lynn
Seafarer123 allaroundanne
Posted
Hi Lynn,
Sorry to hear you have had so much trouble. I have to admit that both my doctor and my Nevro tech were similarly reluctant to either forewarn me before the procedure or to admit after the procedure that the machine can cause pain. Indeed I think their legal people prevent them from calling it "pain" but as you well know - IT'S PAIN! They are clearly instructed to call it "overstimulation." My doctor even mocked me a bit when I asked if the machine had the ability to generate what I was calling "phantom pain" (I guess that's the name for when people with amputated limbs feel pain in the missing limb, so he acted like I was kind of an idiot for saying I was feeling phantom pain), but still, after all the implants he has done he should know to be on the lookout for such a reaction, even if it is misnamed. Fortunately for me I discovered the pain effect during the trial, so I went into the permanent trial with my eyes open. I feel badly for people like you, though, who had to go through trigger point injections before they would admit there was a problem.
As for the part about the doc saying they don't like to tell everyone about the pulsing and other adjustments they can make - that definitely wasn't the case with me, but probably because I was so vocal in backing them into a corner and admitting what their device was doing. I got them to admit that upwards of 30% of their patients experience this "overstimulation." They started talking to me about pulsing even in the trial. They actually have hundreds of different variations of amplitude, frequency and pulse width they can program into you so don't give up hope. I'm still in the early stages of experimentation with mine, trying to find the level that reduces pain without inducing too much more pain. Good luck!