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davedave Posts: 860
edited 06/11/2012 - 8:42 AM in Spinal Cord Stimulation
After learning my lesson with the burning IPG Pocket question last week, my Rep and I broke the cardinal rule of programming without a backup. I asked to have a couple of minor changes such as moving groups closer together so I could change groups without the stupid antenna. I'm very positional for a Lumbar SCS, most likely because my leads are much lower (T11/T12 and T12/L1). We're figuring that I have more motion at those levels than say mid/lower thoracic area. Needless to say, things got screwed up. Finally got everything reset back to normal today.

Because of this exercise, it's posed a couple of questions in my mind. I figured someone considering an SCS might want to know what is being covered, number of programs, and actual pain.

My Pain
  • Toes on both feet
  • Bottom of both feet (tender foot problem)
  • Tops of both feet
  • Ankles
  • Calves
  • Sharp pain in left calf
  • Hamstrings
Because I'm so positional, I run 7 different program groups depending on my activity:
  • Group A - Workout Group
  • Group B - Lying on the Couch (TV Program)
  • Group C - Stand, used when I'm standing for a prolonged time frame
  • Group D - Sit, this is my main work program
  • Group E - Walk
  • Group F - Sleep
I get good coverage on the bottom of my feet, toes, ankles, and hamstrings. Very limited coverage on the front of my legs and nothing on the tops of my feet. No coverage for the sharp pain in my left leg, I call that area my dead zone. It's a pain changing programs so often, but its better than nothing. I'm getting much more relief now than what I had pre-SCS. My leads have had 3 months to scar in and so far I have no changes at all to my impedance which my Rep finds surprising.

According to my Rep, I'm a bit of an anomaly. He indicated to me that most of his patients run 1 or 2 programs a day. This leads me to the questions of the day:

What's your actual pain?
What kind of coverage do you get?
How many programs do you run each day?




  • If you choose to answer, please leave out the pain levels. Location is more important to the discussion than pain levels of 10+.

  • Dave-
    I have four programs - one that's awesome for lower back, buttocks, and backs of thighs, one that's good for left flank and leg, and two that are right flank and leg. I mainly run the first program at varying intensities from 7-9.5 throughout the day. I have control of the rate and sometimes change that up. I charge every other or every third day.

    I am 9 weeks out and in love with my SCS. I am more active than I've been in 4 years, and people say I look happier and "less tortured."

    Good night-
  • Wow ... that is quite amazing ... wow.

    What's your actual pain?

    I take it you are referring to that for which the SCS was implanted.

    Neck, shoulders, scapulas, arms and hands (to include into the fingers)

    What kind of coverage do you get?

    Decent in my hands, arms and scapulas. When I increase the stimulation to really give good coverage in my shoulders and neck, I can jolt myself with a change of position. So I have found a setting that is a compromise. It gives me adequate coverage and allows me to remain functional without involuntary movements brought on by jolts.

    I can shift the coverage if I need to in order to bring the stimulation field higher, when my shoulders get really out of whack. Problem is, that when that happens, I usually feel like I want to tear my hands off and throw them in the dumpster. So the compromise in coverage is pretty much where I leave things.

    How many programs do you run each day?

    I have 3 programs that run sequentially all the time. I have found that since my revisions last year and getting the leads anchored better, things are far less positional and require very little adjustment. I will increase or decrease the intensity once in a while based on activity level, but I don't switch between different programs anymore.

    At the last programming session, I had recorded which programs I liked and got the rep to create a group which incorporates my 3 favorite programs. Since I have TargetMyStim active, the group although created to look and act like a typical group, is not locked. This allows me to a.) adjust all 3 programs simultaneously with equal amplitude increase or decrease and b.) allows me to adjust any 1 of the 3 independently without disturbing the group or having to switch to a new and different program.

    I do recall that during my first 6 to 9 months of having my SCS, I used several different programs throughout the day. I think it would drive me bonkers if I was having to constantly switch back and forth. Obviously many do require this continual switching, otherwise the companies would not have established icons and programming to accommodate this. I do wonder if you will find this continuous switching mellows out after a while.

  • My numbers just don't add up. I only have 6 program groups (deleted one yesterday during my session), with each group running 2 programs sequentially. The workout and sit programs are locked down because they couldn't enable targetMyStim for them due to the complexity of the program and all the other groups have individual programs for each leg.I have all the whiz bang controls on all the programs, amplitude, pulse width, rate, and targetMyStim where applicable.

    It's not as bad as I made it out to sound. The biggest program changes are from sitting to standing. The amplitude range is around a 2.5 volt difference. If I stand with the sit program, I will literally be on my knees in a matter of seconds. Yes, I make this mistake about 4 times a week, sometimes within the same day. All the other programs are similar in nature, so I usually can withstand being on the wrong program for a little bit. The Rep believes I'm probably as good as I'm gonna be. I'm not gonna give up hope that it won't smooth out a little more over time.

    I will say this, having one of your main groups, sit, broken for a week was a real eye opener for me. I don't have enough pain medication anymore to compensate for the loss of the stimulator. This condition I have has not settled down yet and continues to progressively get worse. The hamstring problem is new and the stimulator just zaps that right out. If I didn't have the meds and the stimulator, I highly doubt I would be working anymore. With 2 kids fast approaching college age and the desire to go to top notch universities, William & Mary and Virginia Tech, not working is not an option. It also doesn't hurt that I love what I do.

    Hope everyone is having a nice day.


    P.S. Yes C, I meant the pain the stimulator is meant to help.
  • I so get this, it's not even funny. This is usually what happens when I stand with the sit program.
    haglandc said:

    When I increase the stimulation to really give good coverage in my shoulders and neck, I can jolt myself with a change of position.
    Of course there are advantages to being positional. I can be laying on the couch watching TV, arch my back just a little and I get a simulated private massage without anyone being the wiser. Or, while I'm working, just tilt my head back just a touch and I can turn the stimulation up. Gotta be careful with the last one, cause sometimes I over do it if I'm not sitting right. The sit program is very touchy cause the amplitude is much higher than all my other programs.

  • I'm almost 7 months out, and still very positional. It's time for me to meet my rep again, I need a few more tweakings. I'm sure I look pretty funny as I move my hips to get more or less coverage.

    I usually only have one program on most days. Bad days I go through the whole thing trying to find something for that day. I'm so used to what I have, I even sleep in a different position that gives me less stim so I don't use the remote to turn it down for sleep most of the time.

    Even though I do have stimulation in the soles of my feet, it does NOT satisfactorily take care of the walking on hot coals sensation I get. That's one of the things I need my rep to help me with, I can't get it on my own.

    I don't understand why this doc said this about me being so positional this far out: Work Comp sent me for an independent medical exam. I did not complain about being positional, the doc just saw how I moved sometimes. He said that obviously my leads were not scarred in, I'm very positional, and if scar tissue ever did secure the leads, I'd probably have to have a revision. I don't understand why that just wouldn't be a reprogramming. Don't know if he knew what he was talking about, but he did notice me moving 'cuz it is positional.
  • Do you have percutaneous leads? It sounds like they might be in an area where there's a large epidural space, so the penetration of the signal is really positional. Just a guess on my part. At 7 months out, that is pretty odd to be so positional. When are you going to see the doc or the rep? I'd be interested to find out what they have to say. Hey, at least it is helping you in managing some of your pain!!!

    I'm the same way at night when I head to bed. I just shift position if the stimulation is keeping me awake. Other times when I'm hurting a bunch, I lay flat on my back and just let the SCS give me a super massage and fall to sleep that way.
  • Yep, percutaneous leads. Waiting for rep to call me back. It is good that I get a decent amount of relief, I just have to do the twist a bit sometimes!
  • I have a paddle with anchors so I was told that they will scar over and it will eventually become less and less positional. I am only 3 weeks out, and very very positional. Even when I turn my head the stim changes. About how far were you all out before you "scarred in" and stopped being so positional? I find it so annoying to finally get a good position and turn my head to talk to someone and the stim stops. Weird.
  • I'm approaching the 5 month mark and my stimulation hasn't changed much from when I received my implant. I'm still very positional when I'm sitting. It's mostly because my leads are much lower than the average bear.

    You do get used to living with a stimulator. You'll find that being positional can be an advantage if you end up like me.

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