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I think I've had enough

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  • I think I've had enough

    After a week's in remission, Interstim stops working for me again. I don't know what is wrong. This morning, I went in for a check of my nerve function. The nerve doctor said the lead was actually placed into my L5 instead of S2 nerve. And that is the reason why I can' get satifactory result. He suggested me to try S3 nerve which may be closed to my bladder. I really don't know what to do. I am so tired of being a guinea pig. No one understands what I have been through.

    Sorry, I just need to vent. banghead

  • #2
    Hi Peiti,

    In terms of being a guinea pig--I know exactly what you are going through. My doctors really seem to be "practicing" medicine...and on me! Not with my InterStim, but with other meds. Anyway, wow, that is a big problem. I hope there are no problems with stimulatiing the wrong nerve! Are you going to go in and have a revision? It could help, since you were seeing fine results earlier. Or find a better doctor!!!

    Good luck,
    Jess grouphug
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      I have emailed you.. I did not realize it was in the L5. I actually do not know where mine is but having success a revision migt not be such a bad idea. also if the magnets are turned on in your interstim any type of magnet can turn you off and on.... I know this sounds silly but if you have magnets to shut your self of why wouldn't any type of magnet you went by do the same?
      hugs to you
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        Hi Peiti,

        I'm so sorry to hear about that latest turn of events. I've heard that recovery is a process with bumps along the way, but you've really been through so much . . .

        I have the same questions that Jess asked. Are they saying that a revision is necessary? Is there any way you could go to a Dr. with more experience (I think I remember you saying that your Dr. is the first and only Dr. to have implanted the interstim in Taiwan, so finanaces must be an issue as far as other options are concerned)?

        I know this is incredibly unrealistic (although more than fair, in my opinion), but I wish your Dr. would help you get to your friend's Dr. (the really good one, who I think is in Detriot?), that you could stay with friends for a few weeks until you're sure that everything is straightened out as far as the surgical groundwork, and other basics are concerned. . .. I know that this is wishful thinking, but I want the best for you . . .

        Of course, after a little more venting and a little more time, you'll find the solution that works best for you. Meanwhile, we'll be hear to listen and to send you good thoughts and gentle hugs.

        Best wishes, little bear


        • #5
          Littlebear, you probably thought I was somebody esle. I don't know anyone in Detroit.
          I guess at this moment, my doctor and the Medtronic rep will want me to try all the combinations of settings and wish that I can respond to at least one of them.

          Thanks for giving me support. I will keep you posted. bunny


          • #6

            Oops, I guess I must have *really* wanted Brat's Dr. (who I hear is wonderful) to take care of you!

            I hope that the reprogramming does the trick. I know this must all be incredibly frustrating (at least its less invasive than a revision, though).

            Yes, please do keep us posted. We're all rooting for you!

            Best wishes, little bear


            • #7
              Hi there Lil Bear
              my dr is great, really, and I am just outside of detriot wink
              I hope my email was of some help if you have any more questions email me

              'The will of God will never take you where the Grace of God will not protect you.'


              • #8
                {{{{{peiti)))))my heart is breaking for you. I know exactly what you are going thru, after living like that for almost 10 months. When I had my revision done my dr was on the phone to medtronics TRYING to get the dang thing right, it just never worked out. I had it removed last OCtober (after another year of trying) and haven't spent 1 second regretting it. All of the re-programming week after week just got me to emotionally so bad and once it was out, that part inside of me got better, I didn't feel so much pressure......

                Sending tons of prayers
                and some warm, extra fluffy hugs~
                Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


                • #9
                  My heart goes out to you and many others who has to go threw so many diff. treatments to find out what is best for them I hope what ever you decide is the best for you just remember we are here for you and keep us updated on how you are sending lots of prayers.
                  Medicine taken daily or as needed:
                  1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                  2. MS.Cotin 100mg 3x daily
                  3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                  4. Fentanyl 100 mg Change every 48hrs.
                  5. Gentamicin 80mg install after each rescue treatment
                  5 Leviquin 500mg self start as needed.
                  6. Klonopin 1 or 2 daily as needed.
                  7. Prosed/DS as 1 every 6hrs as needed.

                  I have IC, but IC doesn't have me anymore!