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Permanent SCS and variability of stimulation

anjuanaanjuan Posts: 236
edited 06/11/2012 - 8:39 AM in Spinal Cord Stimulation
For those of you who have a permanent SCS, how long was it before you weren't so tied to your remote? or How far out from surgery were you where you had a reduction in the variability and you didn't have to change the stim level every time you sit, stood up, or laid down?

I am only 3 weeks out so I know I still have a ways to go before the the leads scar down, but I wanted to see what the general feeling was from those of you here.



  • it took me several months. I was just so fascinated with it that I played with it all the time. I remember "C" talking about how much she adjusted per day and I felt glad that I didn't have to do it that much. But now since she got things redone, I think she said she has much less need to adjust. That is such great news!

    My goal was to get a good day program and good night program and then I was happy.

    Take care,

  • That's somewhat accurate. I think that over time I have just gotten used to the stimulation to the point where I don't have to constantly adjust the IPG for a level of comfort. I have found the settings that for about 85% of the things I do, it is perfect. The other 15% it's like learning to live with a certain level of chronic pain that you dismiss and press on with.

    The stimulation was effected by the loss of the strain relief loops when my anchors tore loose and since having those repaired things are significantly more comfortable. Instead of making adjustments several times a day as I did the first year, now I may make an adjustment or two every few weeks. Those adjustments are more due to changes in daily pain perception brought on by fatigue, illness, or menstrual cycle.


    As far as stability of the stimulation field itself, that came with time. As things healed and scared in real well then the shifts weren't as bad. Also just finding that perfect setting that allowed me to have consistent coverage without zapping myself made a huge difference.

    It's like anything new that you learn. The more you do it, the more you get used to it and the better at it you become.

    Oh and I also believe that because of the SCS, we become more in tune with what our body is feeling at every given moment of the day. Because of this we tend to almost over-analyze our daily physical well being. Long gone are the days when we could claim that ignorance is bliss.

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  • I don't know about the others...but I was what they (rep and doctor) called VERY positional. I am 3 months post implant and I found that I need a day program and night program. I am a school teacher so i don't sit alot, when I do I have to turn down the stimulation and at night it is almost turned off. I hope this gets better with time...but I work through it if I am going to sit for a minute or two...if longer I change to a different program.
  • To mention, here is good a place as any.
    I only had 2 programs, a A that did the front of my shoulder and down to my thumb. A "B" that did the top and back of my shoulder, plus "leaked" clear to my toes! So at low levels it covered my shoulder pain fairly well and cranked up would give me a full body massage :D

    Yesterday I finally got the PM to give me a C :D
    It is both programs at once and it does a better job so far than either one. Seems less positional since it has more contacts firing at once. I think, so far it is going to be my favorite. He also asked me to turn the SCS down until I can't really feel it at all and sleep with it on. Bumping it up very slowly over time till I can get used to sleeping with it on. I'll be trying that.

    At 6 months, while mine is still positional, I have gotten used to what to do if I want a different sensation. Sometimes you will get strange looks as you find yourself positioning yourself different for a different feel. Oh ,well, at least I am used to getting strange looks.
  • I am not very positional but I have the paddle leads and Wrambler has the percutaneous. I have 7 programs: A just left leg, a just right (which doesn't work anymore, my favorite which I use most of the time, a couple that if I turn up to "jackhammer" I can feel in some parts of my feet but its so intense its kind of unpleasant and gives me a stomach ache. I'm phutzing with using one or these programs for just 30 minutes when my feet really hurt and then switching back to my favorite program. There are a couple I just don't use.

    With regard to having my remote, I went to work one day without it. I forgot it at home. After a momentary panic, I just went on with my day, happy I was on my favorite setting. Susan
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