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  • #16
    Rachel~I'm confused as to how you are hooked up with this temp for so many weeks. Where is the device itself? I understand how the wires are put thru a hole in the cheek of you fanny but where is the device and are you able to reprogram?

    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #17

      I too seem to have more pain than frequency/urgency. But when I flare I get urgency and retention and that feeling that I'm never empty. I rulled the interstim out as an option last year when I learned that it wasn't marketed for pain. The main difference between the stimulators for pain and the interstim are 2 things:

      The pain stimulators (ANS and medtronics version) are multiple stimulators along the area that the leads attach, versus the interstim that is just one or two leads with 2 places of stimulation.

      The other difference is that the ones for pain attach to the epidural space or the spinal cord and the interstim attaches to neurve endings from the sacral nerve not the spinal cord.

      If my dr. had told me that he wanted to do a perm. implant I would have said absolutely no way! But he has watched my severe flares with remission in between. He specifically told me that he did not feel like I needed one permanently and that he was hopefull that the trial would pull me out of the flare. The great thing about the trial is that it's just a few wires inserted in my back and taped down on the outside. The leads are then attached to my outside box. If I had a problem with it, my dr. said he would pull the wires in his office and that would be the end of that. I wouldn't have to deal with the risks of the perm. implant but I would still get the benefit of the stimulation. He explained that many people don't need stimulation along a wide area and will respond with decreases in pain by the simpler stimulation of the interstim. Yet he still tells me that it's not for pain but most of his patients have some reduction in pain.

      I have the old trial because my dr. intended for this to be temporary. He inserted the wires through a needle in my back, placed a lead on both sides of the sacral area and then taped the wires on the outside to my back. They have slack that I can then plug into the trial stimulator one at a time. My left side has moved a bit so now I'm plugged into the right side. The trials that most people do now are intended to lead to a perm implant so the leads are placed through an incision and attach to surrounding tissue then to come out in the hip and attach to the trial stimulator. He told me that he has seen my kind of trial last a patient up to 6 weeks. The main concern is getting checked for signs of infection where the wires go in my back. Other than being sick of the tagaderm tape on my back it's been a breeze and definitely an answer to my prayers. I've heard some people here say that you can only leave the trial in for a few days but I've had no problems and am back to all my usual activities. I couldn't twist, bend etc. for the first 2 weeks but now my dr. said any additional time with the leads in place is just a bonus so I don't have to be so careful. At first I just wanted to give it the best possible chance of working and thank goodness it did!

      I hope other uros begin to see this as an option for those like me.



      • #18
        Thankx Rachel
        Your procedure is the same way that I had my first trial done and I liked it ALOT better than the staged had me confused

        I pray that this continues for you and think it is a wonderful idea. You dr is trying to get the message between the brain and the bladder jumpstarted and I think that's wonderful. WE may get lucky and they may find that something like this is useful for us ICer's.........

        tons of hugs:blink:
        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


        • #19

          thanks so much for telling others of the two devices made from Medtronis's. I have the synergy neurostem for my I.C. pain which also stopped my urgency and frequency. I love it and have had it for almost a year and a half now. I hope others check into this device if they are concedering a neurostem from medtronics.


          • #20

            Our plan is to see how I respond to the permanent interstim because I had a remarkable reduction in pain and retention with the trial. If the pain returns and is out of control again then I will be discussing the Synergy or other neurostimulators. I hope this less invasive InterStim does the trick but I'm not afraid to go further if I need it.



            • #21
              Hi yvette

              i saw your post and am excited because this must what my pain doc is talking about, rather than the interstim. I was so confused because pain is my major symptom and now I've printed that page off so I understand this one is specifically for pain.

              Thannks much!
              I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

              Medications I CURRENTLY take:
              90 mgs Ms contin (45 mgs Am/PM)
              Percocet as needed
              Topomax 100mg day
              Ambien 10 mg bed
              desipramine 25 mgs

              If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
              Albert Einstein