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Interstim adjustments

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  • Interstim adjustments

    Hi I have had the Interstim in for a year and a half now and went into one *((& of a flare retention urg/frg having to self cath alot which led to a very andgry urethra. This happened awhile ago and then things cleared up but I had a urodynamics doneand my dr said there is the possiblity of having another wire put in to stimulate the bladder ornerves more.
    Has anyone heard of anyone having this done and if so did it make a difference to the individual person

  • #2
    I hadn't heard of anyone having 2 wires installed permanently. But, when I had my trial way back in March, my doc did install 2 wires to the S3 nerve; then in April he tried 2 wires in the S4.

    We tested by turning on one side alone, then the other, then both. With both wires I had complete relief from this constant pelvic pain. Yet, when I had the device installed in August, he was only able to implant on the right side. [img]frown.gif[/img]

    Have had some success with's down at least a notch or two; on a scale of ten my pain only escalates to a 6 or 7 rather than a 7 or 8. The best news is that the pain escalates more slowly. NOw I can stand or sit for a longer time before that crushing downward pressure comes. And, if I get off my feet (and my butt!) I can rest to bring the pain down. [img]smile.gif[/img]

    FYI, I do wear my TENS device with the electrodes placed on the left side near the sacral nerves there. When I turn it up so it's really strong, and almost painful, there is more relief from pain. [img]smile.gif[/img] Maybe that would help you? By the way, I did check with Medtronics who said it would be OK and with my doc first before adding the TENS about 8 weeks after the implant.

    The device has given me tremendous relief with frequency and urgency. My voids are down from 18 to 12 per day. And, the best thing is that I am only getting up 1 - 2 times per night. What a miracle that is! [img]biggrin.gif[/img]

    But since I can't drive(from side effects from pain meds and pain itself) for more than 15 minutes or shop for more than 30 minues I don't have anywhere near a normal life. So the doc is installing the 2nd wire on the left side as a trial next Fri.

    If that works as well as my March trial he will install it for me. He's already told me that he will talk to and fight with the insurance company if necessary to get a 2nd Interstim. He will request it for pain.

    Wishing you and everyone the best. Isn't technology grand? We are so fortunate to live in these times. Hey, perhaps we'll start a group of double-wired people. What do you think??? We must be test cases.

    Yikes!! this is a long post. Thanks to all who labored to read it. Please send some responses so I don't think you've been scared off by my BIG mouth!?! [img]confused.gif[/img]
    Thinking of everyone and sending positive thoughts and prayers,
    Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,



    • #3
      Susaan~does that mean if it works, you will have a device in each 'cheek'????? Will you have the original trial done or a staged trial?????

      My first surgery was a piece of cake in 99. I had fantastic results immediately but it never helped with pain. This second surgery with the staged trial was horrible and I'm not too sure that I would put myself thru it again. I am seeing some results but nothing as good as the first one was and I'm still in pain from the surgery so I honestly don't know if I am going to have any pain relief from this one or not. Right now, I'm just praying for results with the urgency and frequency [img]eek.gif[/img]

      Let us know how you do, okay?
      wishing you the very best~
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


      • #4
        Hi Sandy,

        I have heard of someone having one put in both sides. They were a patient of Dr. H but I do not know of the outcome. When is he thinking about doing this? I hear his waiting list for original implants is 2 to 3 years right now.
        I actullly talked to him on the phone yesterday. I was amazed that she put me through to him in less than a minute. I have a checkup on Dec 10. Take care Maureen