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Need Responses ASAP if possible - Going through Trial Now

LumbarLynneLLumbarLynne Posts: 67
edited 06/11/2012 - 8:47 AM in Spinal Cord Stimulation
I went in today for my trial. It was in the office. I had some valium before but it didn't help much. She just used a local. It was painful at times but she just kept giving me more lidocaine every time it got painful. Pushing the leads up to T8 hurt too (no lidocaine for that)!

Anyway, got through that and then went for programming. My pain is in my hips and low (L5, S1) back - more the right side but some on the left - not in the center and some pain around T12 where I broke my vertebrae. I have no leg pain.

Every program we tried (and we did this for over an hour) always had stim in my legs. I could never get any coverage in my back no matter what we tried. A couple of times I got legs and stomach. A few really odd ones were legs and upper chest. We did get one with legs and hips but for me to feel anything in my hips, my legs had to be soooo strong that I could not walk with that and can't tolerate it for very long. They sent me home with that program and said to wait for the lidocaine in my back to wear off and see if that changed anything and then come back tomorrow to see if we get anything different.

I don't want any stim in my legs. I don't have pain there and it is not pleasant to have the stim there (especially strong) when there is no pain - and any setting they tried had leg stim as part of it.

Any ideas? Thoughts? Suggestions?

I am so discouraged and just feel like pulling the wires out and giving up! I hate that I have to deal with the surgical pain for nothing!



  • HI lUMBARlYNNE, I had a few ESI'S that were done with a local before but I NEVER experenced what you have gone through. I advise you not to pull the leads out as you may cause more damage. I had my Trial put in in April and I don't even remember taling to the tech. Maybe the leads are placed wrong. I Wish You The Best, but DO NOT TAKE The Leads out. Call the DR. and tell her that you want her to take them out. SLH
  • I didn't mean I would take the wires out myself, LOL .. but that I would just go back and have the doc do it and call the trial a failure... rather than finishing out the week since I don't have any coverage in my back at all.
  • I truly mis-understood u. Don't give up just find another Dr. I had my trial snd permenant, permenent was implanted 7/13. Was the best thing I did since coming out of work to take care of me and not worry about the JOB, ME. I had been suffering since 2005. Hope u make the right choice. SLH
  • You can ask the rep to adjust the pulse width while turning down the amplitude some. When you feel stimulation in the wrong areas, this can help to alleviate the problem. What manufacturer are you using?

    Dave (HTTR)
  • I am so sorry for this...but this is my biggest fear with the scs...that's why I think I'm going to totally deny even a trial and go with a pain pump instead. I hope it gets better and your legs stop getting stimmed for no reason! God bless you as you go thru this trial...I hope something good comes of it.
  • When they were configuring you stim, what position were you in while they were doing it? The problem with a trial is the leads aren't anchored in very well, so they're very positional. The thing that I have done when I'm getting programmed is to assume the position I want treated. I have different programs for different positions. Here are a couple of suggestions with programming that work for me:

    1.) Smaller pulse width will give you a more targeted stimulation but requires higher amplitude to be effective.

    2.) Wider pulse width provides more coverage and drives the signal deeper into the spinal chord. The amplitude does not have to be as high with a wider pulse width.

    3.) Rate tops everything off. A faster rate (100+) will smooth everything out, but I've also found that if the rate is to high, it can sting a little. A really slow rate can feel good some times but in my opinion the stimulation has a rough feeling to it. You have to experience this to really know what I'm talking about.

    Have the rep try all the different combos. Don't be ashamed if it doesn't work for you, a stimulator is not for everyone. You can at least say that you gave it a shot.

    Dave (HTTR)
  • has given some really good advice and yes do not feel that it is something you could control.
    We are wired a certain way, some of different. I have to put up with different levels of stim in my right hand lower arm to get coverage in the upper arm and shoulder. I have to put up with stim in my left arm down to my little finger and the outside of my left leg to get coverage on my upper back. I even get a pinch sensation from the program that covers my back but thankfully it is positional and only rarely happens. The one thing I have not beaten is being able to get a good nights sleep. on or off. on it wakes me every time I move and the sensation pulses with my heartbeat. Off things hurt and I still don't sleep. Ambien, stopped working and we are increasing the Pamelor to see if that helps.

    I'm sorry to hear it does not work for you. I had my trial simply because I did not want the "what if" question in my head. You are answering that question yourself now.
  • I had the same problem! I got the permenant one because they said it would be different. So far, it's not. The leg stuff is sooo strong and annoying to be able to feel anything in my back that I'm off work. I also still get the 'shocks' from moving when it's on. If you're not happy with the trial, do NOT let them talk you into the implant! I don't use mine now hardly at all... except to try to mess with it. I've had it reprogrammed three times, and they're telling me now that they can't get the back without the legs because of how the spinal cord is. They said it will get that level and everything below. I can't walk right with all that buzzing in my legs.
  • I know this is going to sound arrogant, but I refuse to believe that these folks helping you can't find a way to program it so you get relief in your lower back without overstimulating your legs. There are so many possible programming combinations that to say there's just no way, is a matter of not trying hard enough. My rep proved to me that with persistence, patience and and a little bit of faith, just about anything can be accomplished with the SCS and its programming. That is of course if it is implanted in the correct location.

    If you really want this to work out, don't give up on it so soon. Hound your rep until he/she gets you programmed in a manner that makes you want to use your SCS more.

  • I have to agree with Jag.....if you are not 100% happy with your trial DO NOT have the permanent implant. It does not get better with the permanent implant as Jag can tell you. That is why you have the trial.....to see if it will work for you and you are happy with it. Also as Dave said....an SCS does not work for everyone.
    Best to you.
    Cheers :H
    Patsy W
  • Thanks for so many responses. I went back today for another hour of programming. They basically said there is no way they will be able to get my back with the leads the way they are and even if they could, it would be my back AND my legs. They have another woman with the same issue so she is having a surgical trial with the Penta (I think that is right) paddle lead done tomorrow. This is supposed to allow you to get to the back without having to get to the legs but they still say it may or may not work. They are supposed to call me tomorrow and let me know if it worked on her. We are pulling out my wires on Thursday. I didn't even take the controller home with me. They said I have these choices:

    1. Do another trial - with the wires higher and more spread out.
    2. Do a surgical trial with this different type of Penta paddle.
    3. Assume this isn't going to work for me and stop here.

    The surgical trial is quite invasive and is almost like having the implant done - just minus the battery part. That defeats the purpose for me since if I am in so much pain from the surgery, I won't be walking on a treadmill after the trial, seeing if I can get enough pain relief to be able to exercise.

    I am shocked at how much pain I am in from the percutaneous trial. I am REALLY hurting, maybe it was something my doctor did but I feel like I underwent regular surgery. I can't wait to get the wires out - hopefully then I will feel better, but every time I put weight down with my right foot, I get a lot of pain in my back where my leads are.

    Anyway this is getting long... but I am thinking I am going with option 3!
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