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Failing SCS Trial?



  • Oh the stress of the SCS trial. Driving ourselves mentally crazy, eh? BTDT. And how am I not shocked that you are an engineer? I'm married to one - oh the familiarity. lol

    For me, because my procedure was so traumatic, it was the last few days before I really knew I wanted the SCS implant.

    A few things: My SCS covers NO muscle pain, not in my back or legs or wherever. Just helps to block the radiating nerve pain. Taking the edge off that gives me a massive quality of life increase.

    I had to turn my SCS off a few times, for a few hours, just to help my brain realize it IS getting relief (or isn't, whichever the case may be.)

    Many folks have their trial, pretty much decide it didn't help that much and then when it is removed, start whining about how much they now realize it did help. lol So what you are going through mentally is common.

    On your ANS remote, there is a button on the left hand side that has 3 electrodes on it - see it? This is explained in the CD video and booklets, I just never saw it or remembered it until last month.

    While you have a program on, you can click that electrode button and increase it or decrease it. Again, this is the material they give us, so it is "legal" for us to. I found that by turning that electrode "up" but within the working program, I got a little "oomph" and it helps.

    Do you think you are having much interference not being in your normal bed? Are you able to walk for longer than 20 minutes.........and then not die later from a nerve flare from you know where? What about sitting......has that window increased? If you had the permanent and no better coverage than what you have right now, would that improve your quality of life?

    Like Susan has said many times, hers seems to be getting better as time goes on. Me, I don't turn mine off! lol But I have days where the nerve pain just seems to burn on through and I can start to panic a little, wondering has my brain figured it out? lol But no, just a bad day.

    When you went back for tweaking, did she think your leads moved at all? Do you know where your lead is placed? Higher or lower than "normal"? Did the lead appear to cooperate and not go off midline? In other words, did the doc struggle to get the lead to behave? Or were they simply trying to find the right spot for your pain coverage?

    When is this removed again? If it is next week, you may really see a big change this weekend as your back continues to calm down.

    Oh, and as to the leg pain - I also have one weaker leg like Bionic Woman. Right after my SCS, my back pain went through the roof and almost laid me out. I was shocked at how just walking inflamed my "formerly reclined 23 hours a day" back muscles. That has definitely improved.

    Oh man, I thought I sent this last night. UGH!! Hope this goes through.

  • Thanks for all the comments and suggestions, my friends.

    SK: Unfortunately, I did not have any "Ahhh" moment. The stimulation does not bother me, but it does not seem to reduce the pain either.

    With some of the programs, i have complete coverage of my right leg from hip to ankle, as I requested. Some programs cover only the outer portion of my leg, but others cover exactly where i complained that I felt pain. So I do not have any coverage complaints.

    I did not want to go into the details of how the lead got to where it is now. Maybe later I will explain what happened while I was lying supine in the operating room, but I don't think i have any complaints as to the placement of the lead. The coverage is what i asked for.

    One of my friends (who will remain nameless) suggested that I should see the sights and take my wife out to dinner during this trial. Maybe would could try the Mideast restaurant across the street.

    C: My wife is quite discouraged. She would like to go sightseeing with me, and I can't.

    What causes my pain? I had a sitting MRI a couple of years ago. My PM doctor here wrote in my diagnosis that I have scar in the right L4 foramen that impinges on the L4 nerve root when I walk. That agrees with what several radiologists have said in reviewing my MRIs and CT myelogram, done more than a year ago. In a previous post, I explained how five doctors (as part of a biweekly seminar) determined that it was scar and not nuclear material.
    The consensus among spine surgeons in the Northeast is that surgery to remove scar is not efficacious, and will only result in more scar -- probably leading to more pain. That is why the neurosurgeon at this hospital referred me to the pain clinic as a possible SCS candidate.

    During this trial I have been turning off the SCS when I lie down, as I usually do not have pain when lying down. I have been having some low intensity footsole pain lying down after turning off the SCS. I don't usually have that problem, but I am not worrying about it. What I am considering is the deep aching/burning of my right thigh and glut toward the end of a 30-minute walk with the SCS on, just as I would have with no SCS.

    I thank each of you for your helpful comments. Please keep the suggestions coming.
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  • I was just checking in to see how you're doing? Have you tried shutting off the stim yet (when you're not lying down) to see how you feel? I would bet $100, if this thing isn't working for you, your pain is not coming from a nerve issue. So at least this trial will have some diagnostic benefit. Who knows. I just want this to work for you so bad. Please tell your wife that I said she should go sightseeing without you. Best, Susan
  • Is that I did not really have an ahhhhh moment either. I was as you are, kicked ny mule, just higher up. It took the PM three tries to get the lead into the space, let alone start trying for stimulation. My T-spine healed with a dip in it closing up the spaces he normally uses.

    After about day 3 or 4 I was starting to figure out how it helped me. I went to work the last 3 days of my 8 day trial and really knew it was working. I went to Disney World between the trial and permanent placement and really, really knew it had been helping!

    My pain is "weird" it flares, it ebbs and flows, The SCS helps in some pains, totally ignores others. Does next to nothing for my knots in my back. You typed a post and mentioned you had been sitting longer than norm. If that alone is progress?

    In a perfect world, we would not have any of these problems, it us up to each of us to decide in the end if what we are experiencing is enough. There is usually a better control and more coverage with the permanent. I know I can get coverage from my neck down on both sides of my body, clear to my toes from ONE precutaneous lead, ONE. The only place it really does not stimulate is my back along my spine. I can even "fake" a massage. Not in and of its self a reason to get a permanent, but when my PM hit that condition I begged him to leave it available to me :D

    I hope the rest of your trial either gets or got better!
  • I am one of those that was very positional. I was positional during the trial but since the permanent placement stitched the leads in the positional was a little better. It wasn't what I call perfect until I had totally scared in. I am only positional in my foot. Don't need stimulation there but if I bend my leg at my knee more than 80 degrees I get a pleasant stimulation in my foot. Added bonus if you ask me. I wouldn't try to tell you what to do...but I think you may have over done in the days of your trial and that new pain is muscle pain. I am not a doctor so that is just my thought.
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  • Thanks to everyone for the comments.

    I think I can distinguish two types of pain. One type is the usual radicular pain along the medial line for L4/L5 impingement. The other type is the sore muscles from walking more than usual.

    Unfortunately, the SCS does not seem to be reducing either type of pain. For two mornings in a row, I walked to the nearest Au Bon Pain, bought a Danish, and returned to my hotel room. First day was with stimulation, which I could feel throughout the walk. Second day, today, was with no stimulation. I gave my own rating to the usual radicular pain. Oops! With stimulation, the pain was a little greater than without stimulation. I am not saying that the stimulation worsened the pain. My condition might have been a little different (but not much). I just don't find the benefit in pain relief.

    I am sitting here typing this, and the greater aggrevation is the back pain, which I don't usually have. I am hoping that will go away when the doc pulls this damn lead out of my back tomorrow.

    According to the very nice medical assistant to my PM doctor, this general hospital (which will remain nameless) does six or eight SCS trials a week, and about 70% go on to permanent SCS implantation. I might fall into the 30% category.

  • I had a failed trial stimulator a couple of months ago. During the trial, I rec'd no relief from my pain and by the time the trial was over, my pain had increased dramatically. My leads were pulled on the third day. I know the stimulation caused the increase in my pain. I don't know why...maybe the leads were placed wrong..who knows. My stimulator was a little different from the SCS. Mine was a PNS, where the leads were placed directly over my area of pain. Now my PM Dr wants to do another trial and use the SCS and place the leads directly into the epidural space and down to my area of pain, which is in the sacrum area. My insurance company doesn't want to approve this second trial, saying it is just experimental and not medically necessary.

    I'm so sorry you haven't rec'd any relief from your pain and I know how very disappointing this is for you.
  • I am also very sorry that the stimulator isn't helping with your pain. That has to be really disappointing. Don't give up in searching for an answer to deal with your pain.
  • I have read several reports about implanting percutaneous leads sacrally with great success lately. Instead of going in from higher in the lumbar or low thoracic area the approach is (for the lack of a better explanation) from the "bottom up". Basically it's like getting a caudal epidural, only with an SCS lead instead.

    Have you spoken with a rep about the possibility of gathering information that can be presented to your insurance company, showing that this approach isn't experimental anymore and is proven effective?

  • Pain Management is working on getting the second trial approved for me...I don't know how long this usually takes. I've been told that my PM Dr has always gotten everyone approved.

    Brothers...hope something works for you. Keep us posted.
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