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Stim 2.0

DjinngerDDjinnger Posts: 7
edited 06/11/2012 - 8:57 AM in Spinal Cord Stimulation
In a nutshell, I've been through the whole rigamarole. I have Degenerative Disk Disease, I'm hyper-flexible, arthritic & my neuophysiology is all sorts of whacky. My nerves go all over the place: cross center, loop back up on themselves...all sorts of weirdness. I've had an uncountable number of Epidural Steroid Injections, a titanium L4-S1 fusion, 16 node SCS & just had my 2nd Medtronic computer installed. I'm also on my 3rd neurosurgeon in 4 years. All of this by the ripe, old age of 31.

I'd initially had the static battery "3-5 year" Medtronic computer installed March 2009. It was a remarkable success! Not only could I walk without pain & go back to work; I was able exercise again & even go on rides at amusement parks--everything I'd pretty much given up on. Some of my more unusual side effects have been the source of much entertainment for my docs & reps. After a considerable amount of research, they've only been able to find 1 other case like mine, & she lives in Germany.

A couple weeks ago, I got an alert that the internal batter was dying--6 months to 2 years early. Instant panic attack. I got ahold of my Medtronic rep, & he was kind enough to meet with me right away to interrogate the unit. Apparently, all the longevity info they use is based on the "average" user who is considerably older & less physically active than I am. I was pulling about 3x average power from the unit, so it was within parameters for it to die when it did.

A week later, I was in surgery to swap out the old computer for a rechargeable 9 year Medtronic. It works & I'm healing okay, but it looks like Program 2 (my right side) didn't take from the old unit, so Program 1 (left side) is running everything. I'm also feeling it in different places than I'm used to. The old one was strongest around my lower back & hips, but now it's just the opposite. It's strongest up near my diaphragm & in my feet. When I turn it up high enough to be effective on my legs, I wind up with foot cramps & difficulty breathing. My follow-up with Dr. W & my rep is tomorrow morning, & I'm hopeful that it's fixable by just fiddling with the settings.

I'm wondering if there's anybody else out there who's on their 2nd unit. Did you have significant variances from one unit to the next? Were they solved with software adjustments, or did it require another surgery to fix the wiring? I'm also curious as to whether I'm really the only person in the hemisphere with the kind of history I've had with this thing. Sorry if I sound vague. It's just a somewhat sensitive set of particulars, & I don't want to risk make anyone uncomfortable by venturing into TMI territory right off the bat.

Thanks in advance for any insight!


  • What are the unusual side effects that you have that your doctor could only find one other person? Everyone on here describes there stimulation differently and of course everyone is different in how much relief they get. We have members that were once relegated to a recliner now living there life and enjoying every minute of it.

    My father-in-law went through two rechargeable simulator's before he past a couple of years ago. He was a farmer and was still in the fields all the way till the end. Your level of activity has no effect on how much power you use. Power usage is dependent upon the program (pulse width, rate, and amplitude).

    Did you just have the IPG replaced or did they also implant new leads? If they didn't replace the leads, is it possible they swapped them going into the new IPG, therefore what was your left is now your right and vice verse.

  • Part of the oddity of my case is that I have abnormal neurophisiology in general. Nerves that should go one place that go another; or they DO go to that place, then branch off & shoot somewhere entirely different. It's like routing a flight from New York to London through LA, Shanghai, Anchorage, Cape Town & Moscow. For example, adjusting a lead that *should* affect my left flank also plays with my right toes & shin. My dad (a dentist) discovered my wonky nerves when I was little & found he'd have to numb almost my whole head to fill 1 tooth because he'd poke a spot, & I'd feel pain on the other side of my face. Needless to say, he was rather amused when we discovered that the issue isn't just confined to my noggin.

    But that's only 1/2 of the issue. What really threw my docs for a loop lands on a more personal side of things. I went through all the threads & couldn't really find anything even close, & it's a tricky enough thing to talk about. Basically, I've become hypersensitive in the pelvic region. Any sudden muscular convulsion--coughs, sneezes, laughing, even nose blowing--triggers what basically amounts to phantom sex. On rare occasions, the bass beat of loud music will synch up with the pulse rate of the Stim, & that'll set it off too. I've also found that I can get stuck in orgasm recursion loops where my whole system gets overloaded & takes hours to settle down, even after I've turned the Stim off. It's a good problem to have, but it isn't something you get used to. My docs or Medtronic reps had never heard of this kind of thing, & I'm the only person I know with the implant.

    I'm not sure which part(s) of my situation they were referencing when they did their research, but my grandfather's family was from Germany so there's a chance it could be some kind of genetic weirdness. I know his nervous system was screwy too, but he never had an implant like this to amplify it so there isn't much to compare.


    I think the problem with the battery life on my last unit was that I had to keep it cranked up so high to maintain my activity level. I just taxed the system more than they're used to seeing. SCS hasn't been available very long in my area, so they're still learning how the things work & what the expectations are from one person to the next.

    Only the IPG was swapped out this time. I found out at my follow-up today that the leads did get switched. In itself, that would've been a really easy adjustment, but something really awry seems to be going on with the programming. Everything input at the same settings as the old one, but the actual sensation is completely different. I just spent almost 2 hours with one of my reps trying to get the thing leveled out again with only marginal success. I have a hotspot on my right side that feels like my appendix is trying to crawl out my ears when I turn it up high enough to be fully effective on my back/hips, but it's better than it was. I think most of my frustration with this is that everything had lined up perfectly the first time around, & nothing had needed changing--it was just plug & play. I just want to get back to my old status quo.
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