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SCS problems.. anyone have this??

JagJJag Posts: 15
edited 06/11/2012 - 8:47 AM in Spinal Cord Stimulation
I was told that the 'shocks' that go down your body from coughing, moving, etc. would stop after about two months of placement. I was also told that they could get the buzzing out of my thighs and legs and just into my lower back. Neither of those things happened. I got it placed in April, and waited for a couple months to use it. I am an ICU nurse, and I do a lot of moving, lifting, etc. I was told I could return to work three weeks after placement. I found when I first tried it again that I got nothing... not even a twitch. I went in to have it reprogrammed. I had shocks all down me if I coughed or moved in the way I need to in order to do my job. It HURT! So I went back in and had it programmed again. I have two programs. I get spasms in my abdomen, ribs, and legs from the stim. I can't use it at work. It's just not possible.

The doc started to reduce my narcotics, but now I'm off work on disability because I can't work in that much pain and I can't use the stim. at work. I think I'm done with working now. I'm very disappointed, as this was my last hope. Not sure what to do. The doc said I should NOT be having these issues, and the rep. from medtronics said it's normal. Anyone have these kinds of problems?? I don't know what to do except file disability and hope I get it. I'm only 38, but I have many other health issues stemming from autoimmune issues. My heart is bad, my brain is bad, and I did have back surgery with rods, screws, cage, and hinge in 2009. I was just put on a chemo med to try to suppress my immune system with the prednisone. The cause of my back injury was autoimmune. It made all of the connective tissue in my back disappear.


  • Could you tell us a little bit about your SCS and the programs you have? This could help to make more sense out of what might be happening to you with the SCS turned on. Generally speaking, when an SCS is causing spasms, it is either programmed with the wrong pulse width for your body, or the amplitude is too high, or a combination there of. What amplitude are you currently running your SCS on. At what amplitude do you begin to feel any stimulation? What type of leads do you have? Is your battery rechargeable or standard?

  • It's a rechargeable battery. I was told it was a 'paddle' type. I feel stuff starting in the 2's or 3's depending on how I'm sitting, and I keep the numbers about 10 no more than 15. I don't like the buzzing too much, so I tend to go to 10. Not sure if those are the numbers you're wanting. I don't know what programs I have. They've done an A and a B. They both hit my thighs, which then have spasms as I already had issues with spasms in my legs prior to having it placed. I think this is due to another autoimmune disease, although I'm not sure. I've had MS symptoms for years and I have baclofen for when the leg spasms start.
  • Lets back track a little on your settings. Do you have bars like on a cell phone for the 2 or 3? If so, that's your amplitude. For the 10 or 15, does the symbol look like an arrow pointing left and right or like a speedometer. The arrows are pulse width and the speedometer is rate.

    What areas are you trying to get stimulation in? Do you know what level your leads are implanted at? I have percutaneous leads implanted a little lower than normal, between the thoracic and lumbar area. Because of where my leads are, I'm very positional and I have different program groups for different things, i.e. sit, stand, walk, lounge, and sleep. Each group is configured to provide the best coverage possible for that position.

    If you're trial went well, I'm sure with a little patience you can figure this thing out.

  • Yes, your description is correct. The '10' has a gauge like pic and the other numbers (2's to 3's) have the bars. The trial... well, that was kind of a mess. I had to be off work for it so they put it in on a Friday and took it out on Monday. I had so much of the 'shocks' everytime I moved I barely used it at all. I told them this, but they were really wanting to put it in. It was the only option they were giving me for treating the pain that had gotten so bad that I was barely making it through my shifts. I was told that they would eliminate the leg buzzing and the 'shocking' with the permenant one. However, now I'm being told by the rep that I shouldn't have been told that. I was told that they can't get the buzzing out of my legs and the shocks.. well it's something I have to live with. I only need it for my lower back area. It's post surgical pain that has never been controlled since the surgery. Apparently, there are some issues with the surgery and I have bone on bone in some areas. I was told that I wasn't a good candidate for another surgery because they doubted it would help with the pain and she felt that my back was stable enough with the hardware. I can't have the hardware removed because the bone never healed at all. She said there was only one small sliver of bone growth even though they used the bone stimulating paste in there. The scar is in my mid thoracic area. I know I asked them to make it so it could hit the thoracic area where the 'new' disk herniated as taking neurontin when I'm at work makes it hard for me to stay awake and alert.
    Oh, the 10 has the spedometer sign, but I don't have anything that I can see that has arrows.
  • Ok, so here's the next question. When you had your last programming session, did the Rep give you a printout of your programs? If so, I'm curious what the rate range, amp column (upper and lower), and PW column (upper, programmed, lower) are.

    I will tell you, a rate (gauge) of 10 is really low. 10 would drive me nuts, but that's just me. Most of my rates are from 60 to 130. If you turn the rate up, be sure to turn down the amps (bars) first, cause the stimulation may get a little strong.

    On your stimulation, is it really strong in the back or do you have to turn the amp (bars) up to feel it. With a little trial and error, you should be to find some programs that will be comfortable for you. It takes time and patience to get everything just right.

    It was wrong to have the implant with such an iffy trial. If you're interested, maybe we can help you get some relief with it.

  • The 10 with the speedometer sign is the pule rate. It should adjust anywhere from 2 on up (my highest is 85). The pulse rate for the stimulator is similar to your own heart's pulse rate. However the faster it is set, the smoother the stimulation feels. If I had mine set at 10, it would be like someone banging on my back as if it were a kettle drum.

    Normally when pain or stimulation of the wrong areas occur, adjusting the pulse width and amplitude down, will take care of that. Unless you have been given control via TargetMyStim, you won't be able to adjust the pulse width, only the rep can.

    Have you tried changing the pulse rate to see if it would make the stimulation feel smoother?

    Not all reps have the same "talent" for programming as the others. So if your rep isn't able to reprogram you to a better spot, see if the rep will bring in another rep to give it a shot.

    Hope you get things squared away soon.

  • I wasn't given a print out. Every time I've gone in to have it reprogrammed, I was only given one program at a time. I don't feel anything when I'm sitting down having it done until they get to the 2's or 3's. It's always stronger in my legs than my back... so I have to have them back it down so it's less strong in my legs. Last couple of times I got up and moved around after they messed with it to see if I could tolerate it when standing or walking. I still don't understand why I'm getting the huge increase in stim that feels like my legs are being shocked when I'm moving around or I cough. I guess one of my questions is "Is this going to last forever?" I haven't tried turning it up past the 15 mark because the buzzing makes me crazy. I guess I should, though, to see if past that mark it gets any better.
  • If you turn the rate up higher, it will still start to smooth out and the buz isn't as bad. Next time you get reprogrammed, make sure that they give you a copy of the program printout. Once you start to find programs that work, you don't want anyone messing with them. It's your backup.

  • If you turn your amplitude down to where you just barely feel it, then increase the pulse rate up to 60 after which slowly increase the amplitude, I bet that you will find it to be far more comfortable.

    Think of it this way. Take a garden hose and put a spray nozzle on it. If you adjust it to stream, you get a very strong and overpowering jet of water that can dig holes in the dirt if you aren't careful. Now turn the nozzle to a shower setting where smaller droplets are coming out at a faster rate, now you have a mist that soaks more area yet doesn't dig holes.

    The increased stimulation when you cough or sneeze or move certain ways should be reduced by the change in pulse rate. Think about sticking your hand into the straight blast of a fire hose on stream. You may break your wrist. Now put it on mist and it douses the flames and covers the area far better.

    Hope this makes sense.

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