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Need to hear success Interstim Stories

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  • Need to hear success Interstim Stories

    I am having success with Elmiron, but the side effects are such that I have to quit taking it. I have had IC for 20 years so it is a nightmare to be told I can't take what works. I have urgency, frequency and doctor is planning an Interstim trial. PLEASE....I need to hear good news stories on how it works...Thanks.

  • #2
    Hi DD:
    Well the InterStim trial procedure is done with a lead wire placed into the sacal nerve area on any of these S2, S3,S4 area of the spinal core.
    You have a box, something like a little radio attach to the side of your pants and it set for you but you are aloud to turn it up to what stimulation you need to have at that time..
    You have this for three to four day ,you must keep record of intake and outtake and if you results are up by 50%,then the InterStim will have good results for you ..
    I had the InterStim Implant done over one year and half and am having wonderful results..
    I am much different then most on the board as I do not have IC , I have pelvic floor dysfunction..
    Also my bladder muscle just die overnight and I was unable to pee on my own, so I self-cath for two years and half and now with the Implant I am peeing on my own, which is a blessing each and day of my life..
    The InterStim does not help with pain at all, most of the girls on the board will tell you that they still have to take something for pain..
    Have you tired other treatments like bladder instillation , have you had a cystoscopic or hydrodistention , Urodynamic testing or biofeedback these are good test to do..
    Why I ask , the InterStim should be the last resort..
    Others will posted their results I am sure of that DD..
    Good luck on what you decided and here is some web site to read about it too. or
    Phone number is 1-800-664-5111 ext.3000,they have a video on the whole procedure you can get from them as well..
    Keep us posted on how you are doing and your results ok..

    Hugs Debbie

    Thinking positive has got me through to another day!!


    • #3
      Ok, I think Metronics needs to hire me for their advertising!!! My whole life changed after my surgery in July! I was diagnosed with IC about 5 years ago and it quickly progressed and was considered the worst case my 3 different doctors (pp, uro, uro/gyn) had seen. I tried every treatment option except for silver nitrate, cloripatin and bcg. I had total retention and had to cath from 30-40 times a day. All of my doctors were talking serious with me about considering to have my bladder removed. I ended up getting my uro/gyn to find out more about the interstim and to make a long story short flew 1500 miles to Indianapolis for the surgery. Within 2 hours after the stimulation had been turned on I was able to urinate on my own. Within a week I went from going 30-40 times a day to going 7 to 8 times a day. It has made a world of difference to me. Yet I have to make the normal , not everyone gets this sucess and the make sure you have tried other options first.


      • #4
        Thank you so much for responding. Yes...I have tried almost everything else since I have had IC for 20 years ! Luckily it is not as bad as some, but it really sucks !
        Thanks for the hope !


        • #5
          Everything failed for me until my interstim surgery in Sept 1999....I was housebound, peeing every 15-20 minutes and in unbearable pain. The interstim did NOT help the pain but I only visit the potty 7-8 times a day now. I am able to travel, go shopping, hockey games, and the neatest part....I no longer obsess on how much t.p. I have in the house The surgery was the best thing I have ever done for myself.
          Best of LUCK!!!!! teri

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