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  • New member--Interstim question

    Hello everyone. I was diagnosed with IC 5 years ago. I tried multiple conservative treatments including DMSO, Elmiron, Chlorpactin, Detrol and Ditropan. For the past year I have had great success for the pelvic pain part of the disease with heparin instillations. But the heparin did not help the urgency and frequency.

    So I elected to try Interstim. I had a very successful test stimulation and we decided to go ahead and do the permanent implant. I had that done on 11/25. Things have been great so far. It is wonderful to finally sleep through the night.

    This past Thursday I started having a sharp stabbing type pain way up in the vagina. So I used the remote control to turn the stimulation down quite a bit and the pain was still there. I am seeing the doctor on Monday and the Interstim rep will be there too in case reprogramming is necessary. I am wondering if anyone else has experienced similar type pain and what they had to do to resolve it.

    I am very excited to have found these message boards. It is wonderful to have support. Thanks. hi

    Kristen

  • #2
    Hi and welcome to the icn family. I dont have the interstim so i don't know your answer but a few ladie here does have it and they will be able to help you more on that.
    I take the heparin at home treatments that has seem to help me i take anywhere from one to three treatments a day. (it's a new study) but so far i have done great with it. I wish you luck and keep posting to let us know how you are. grouphug I hope that they can fix things up for you at your appt.
    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!

    Comment


    • #3
      Hi Kristen, welcome to the boards! I have the interstim and I have never experienced that--but I'm pretty new to it. I had the trial 9/11 and then the implant 10/01. There are a few of us around here, I'm sure someone will help ya if they can. Good luck!

      Hugs and love,
      Jess
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

      Comment


      • #4
        Kristen:

        I had the permenant implant on 10/31. I know what you mean by the sharp stabbing type of pain because I experience that kind of pain after my surger. However, my pain is near my implant site, actually it is the lead place where I felt the pain was. I told my dr and he said it was possible to have a new pain on the lead site but he also said for me, I still needed time to heal from the surgery. This new pain is not always there, for me it is just temporary.

        I think for you, you may need some time to heal from the sugery. You sure should tell your dr about this new pain. I hope the pain will go away soon.

        Comment


        • #5
          Kristen:

          I've had Interstim since 02/00. See what happens at your reprogramming tomorrow. Sometimes they can "fix" those stabbing pains with reprogramming. If that doesn't work they sometimes opt for a revision surgery where they move the lead.

          Hope that helps. Good Luck Monday

          Jen

          Feel free to email me if I can help in any other way. [email protected]
          IC dx 1996
          Interstim 2000 removed & reimplanted 2001 & 2004
          Hunners ulcers
          urgency/frequency
          Pain

          Comment


          • #6
            hi Hello everyone. Thank you so much for all the responses and encouragement that you have given me for my stabbing pains I was concerned about. I cannot tell you how wonderful it is to have support.

            My appointment with the doctor and the Interstim rep went very well. We did some reprogramming of the Interstim and hope that will help with the stabbing feeling. If not, then the doctor said that we probably will need to do a revision procedure. They are optimistic that the reprogramming will do the trick. I felt really great right after they did that, but I have to drive 3 1/2 hours to go to the doc and the long drive home kind of got things sore again. HOpefully it is just from the drive.

            Thanks again. I am so thankful that I found this message group. What a wonderful thing!!

            Kristen

            Comment


            • #7
              Kristen,

              Glad things are going better for you.

              Jen
              IC dx 1996
              Interstim 2000 removed & reimplanted 2001 & 2004
              Hunners ulcers
              urgency/frequency
              Pain

              Comment


              • #8
                hi kristen
                I had my implant on 4/16/03 and never experience any pain where you have refered to I hope its just a reprogram issue
                Brat
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  hi Thank you so much to everyone for your support. I think the reprogramming helped. I have not had the pain over the past few days. Hope it continues.

                  Have a wonderful day!

                  Kristen

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