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Can't stop stimulation in my legs

dryflydryfly Posts: 23
edited 06/11/2012 - 8:47 AM in Spinal Cord Stimulation
Met with the rep to get some adjustments made this AM. He basically told me that it was not possible to stop the leg stimulation during the trial, but that the permanent (paddle leads) would be more targeted. Right now it's almost irritating to be honest......I want stimulation RIGHT where my pain is and nowhere else.
Has anybody else run into this problem? Did it get better after the perm. implant?


  • The percutaneous leads used for SCS trials are far more difficult to "focus" than the surgical (Paddle) leads that are permanently implanted. The trial leads are only tacked down to your skin, so they move around quite a bit in the epidural space during a trial. A paddle lead is shaped so as to fit and fill most of that space and most are tri-pole so they have many more options for programming with far more focus and accuracy.

    I have two percutaneous leads in my neck and they also stimulate regions in my legs. The main focused stimulation is in my shoulders, arms and hands. I rarely feel the other extraneous stimulation anymore. Sometimes I find it is an extra benefit that helps me relax more.

    Hope this helps.

  • I have the paddle lead in my cervical area and I do get some stimulation in my legs, depending on what program I'm using, and I also have some positional stimulation as well but it isn't nearly what it was during the trial. Just wanted to tell you my experience because like "C", I still get it in my legs and I don't think there is any way to totally avoid that.
    Good luck. I think you do get more accustomed to it once your permanent device is implanted and you learn to enjoy it too! Sort of like an internal massage to your legs and feet!
  • I'm really having allot of reservations about going ahead with the perm implant. I think there are a couple of things that are frustrating me....one: I had really high hopes for this to work and I think I had my hopes a little too high. Second: the extra "buzzing" in areas besides where there's pain is very irritating to me. I understand that it's something you get use to, but frankly it's annoying right now. I have met with the St. Jude reps three times since last Tuesday for programing and I still cannot get the coverage I need without making my legs feel like they're vibrating. There are just so many variables to this and I'm hesitant to put my back through another surgery if I can't be assured of the outcome.
  • I don't think any of us here can make a promise that they will be able to tune it to only cover the exact area of pain. Our bodies are sometimes just not cooperative enough to allow for a direct hit.

    Since it is a paddle lead they want to place. The chances are better they can get a more direct hit with less sensation to other areas, but?

    I was not thrilled with the way mine provides coverage as it is a cervical, precutaneous, single lead and yes it bleeds down to my legs a slight amount. When it sometimes gets on my nerves I turn it off. Gradually over time I have gotten used to the extra coverage and now leave it on 24/7 on a low level and when I need more strength I can either tilt my head a certain way or get out the remote and turn it up.

    Only you can decide whether it is worth another surgery.

  • If you are having reservations now and finding the vibrations in your legs annoying now I doubt if you will ever get use to it. I would not let anyone push me into something you really do not want.
    You do not have to make your mind up now. Give yourself time to think it over good after your trial. This is just my opinion, for what it is worth.
    BTW....You do know a pain pump will stop your pain and you will not feel the effects of it anyplace else. Just a thought.
    Best to you.
    Patsy W
  • love the excess stimulation. The best way I can describe how I experience this is:

    A massage chair on the inside. I find it very comforting. When I turn it off, I almost panic. I didn't feel this way very early on, but now, the buzzing in pain areas AND the extra buzzing give my brain something else to think about, and I think this is part of how it helps "decrease" my sensation of pain. And even when the SCS is not helping that great during horrible flares, the buzzing STILL helps relax me.

    I have sensory issues and really wondered if I could truly handle the buzzing - suspected it would drive me crazy. I am very surprised I had the opposite reaction.

    Good luck on your decision.

  • I've never asked about or looked into a "pain pump"........how do they work?
  • You had asked about a "pain pump".
    It is a device that is implanted just under the skin in your side, just below the ribcage that holds pain meds. The meds are "pumped' via a catheter to your spinal cord. because the meds do not have to go through your system only a fraction of the meds are needed to stop your pain and you also have fewer side effects.
    Either Morphine or Dilduid are the meds most often used in the pump.
    If you will go to the "Pain Management" forum here you can read more about pain pumps. Meydey and I both have posted info about our pumps under the question.."NEW info on intrathecal pain pump"
    You can also type "pain pumps" in the search box at the top of the page and a list of comments about pain pumps will pop up.
    A pain pump IS a last resort for pain control. It is used when all else fails.
    I had a pump implant after the SCS failed to help me and am very happy with it.
    Best of luck to you. I do hope you find relief from your pain.
    Cheers :H
    Patsy W
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