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I'm going to discuss the Interstim with my uro...

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  • #1

    I'm going to discuss the Interstim with my uro...

    We have already discussed it a couple of times but I think I'm ready to set up a test stimulation. I posted here a couple of times to ask questions about this and I know a few people thought that it was way too soon for me to be considering this since I have only been treated for IC symptoms since 4/00. (I probably had it for years before it since I was having "UTI's" w/o any bacteria.) Anyway, I know it's serious stuff, I don't consider it a quick fix. My uro is very knowledgable about IC, is one of the "experts" on the ICA website, and is scheduled to be a guest speaker for the ICN chats. He also said I have been an ideal patient b/c I have been willing to try anything. When I had my hydro last July it indicated mild IC, but I have moderately severe PFD. Bladder treatments don't really help or hurt me, and I've tried almost all of them at this point including alternative treatments. I don't have food triggers and when I drink alcohol I feel better b/c it relaxes my muscles. I see a PT twice a week, a biofeedback specialist, a Hellerwork specialist (similar to Rolfing), have a home estim unit (which feels good when I'm using it and I've told my PT I wish I could keep it in all the time), do kegels, stretching, progressive muscle relaxation, deep breathing, meditation, warm sitz baths, etc. All of these things help with my PFD but they don't last. The only thing that ever helped A LOT was when I first started on Ativan but I became tolerant to it. We switched me to Valium to see if it would help more but it doesn't. And I don't have pain. Just pressure, urgency, and frequency and when I'm flaring I feel like I could pee 24/7, although hardly anything or nothing comes out. And I flare weekly. Sorry for this long speech. I want to be able to come to these boards freely and ask questions if I go thru w/this trial and I just want everyone to know that I am not jumping at this treatment or think it is a piece of cake. I believe that no conventional bladder treatment will help me b/c my symptoms are very much coming from my pelvic floor. Just this AM my PT did myofascial release intravaginally and she said that I am in bad spasm again. I already knew that, I feel like cr*#. I am also discussing this procedure w/ my loved ones. Okay, I'll stop now. I just really need support with this and don't want anyone to think I am jumping the gun (or if you do, please don't say it harshly, I feel very fragile right now). Well, any advice/encouragement would be greatly appreciated. If you would like to email me directly my address is [email protected]

    Thanks,
    -Nancy R
    Tags: None
  • #2
    Hi Nancy:
    Well I have PFD too and I did biofeedback and did a couple of Urodynamics testing and this is where I found out my problem..
    Only you can do what is best for yourself Nancy , I am here to give you support..

    Doing the InterStim trial also will let you know if the InterStim Implant is going to be a benifit to you or not Nancy...

    The trial is not not bad, but make sure he give you lots of freezing in the lower back area as it can be painful if there is not much freezing, and make sure you don't bend over or lift anything heavy during your trial..

    Just read all you can and get enough information as you can on the InterStim trial and Implant go to www.interstim.com and read all you can and I do believe if your doctor knows what he is doing ,that it is a good thing too, also maybe you could ask if you could talk to one of his patients that had the InterStim done too and how it went for them ok...

    I am here for you and I will e-mail you more about it ok, just know I care and it is a big decision and ONLY you can decide what is best for you Nancy..

    I had my InterStim Implant now for two years and it has been a real blessing to me too!!
    Good luck on whatever you do Nancy!!!

    ~~Hugs~~Debbie

    Thinking positive has got me through to another day!!

    Comment

    • #3
      Dear Nancy,

      I had a trial a couple weeks ago and had a positive result. I am waiting to have the final procedure.

      Feel free to e-mail me if you have any questions.

      Amanda
      ([email protected])

      Comment

      • #4
        Nancy,
        I hope things go positively with your doctor. As you have probably read about me, I've had alot of experience with trials. If you have any questions, don't hesitate to ask. Interstim was not the answer for me. But I totally support any IC patient going down this road. I sincerely hope that it helps you!
        Every one of us has to come to these decisions with the help of our doctor and family. Based on your symptoms, I think you are doing the right thing. Interstim has helped alot of people. Hopefully it'll help you too. I understand what you are saying about PFD. I go to PT too!
        If you go back and read my old posts, Please don't let my negative experiences discourage you. Let them educate you about all the negative outcomes. But each of us are unique and my experiences have been unfortunately negative and unique.
        Not to scare or worry you, but my first trial was very painful. Alot of people don't have much pain, some of us do. My pain occurred when the needle hit the nerves or the bone. I wasn't prepared for the intensity of the pain. I say this not to scare you, but to prepare you just in case. I took both valium and vicodin for my 2nd and 3rd trials and it helped tremendously. If you are worried about pain or anxiety, consider asking your doctor about pre-medicating.
        take care,
        Melanie
        Melanie
        __

        Comment

        • #5
          It sounds like you have done your homework and pretty much know what to expect.

          Please know I wish you well and hope this works well for you.

          Sending warm hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.           [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

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          • #6
            Hi Nancy.

            I understand exactly where you are coming from. Like the others, I think you've done your homework and Interstim sounds like a really good possibility for you. I'm excited for you and will look forward to hearing about your experience.

            Good luck!!!!
            Melanie J.
            "The sun shines not on us, but in us." John Muir

            Living a happy life in spite of IC! http://www.ic-network.com/patientstories/melanie.html

            Comment

            • #7
              Thank you thank you thank you!!! I am very nervous about this but excited as well, although I am trying not to get my hopes up as I've done with so many of the other treatments and just been miserably disappointed. I scheduled an appointment with my uro for next Thursday and emailed him so he knows that I'm going there to discuss this with him. I'm sure I'll becoming here frequently over the next couple of weeks and asking LOTS of questions. Thankfully I have a distraction so I don't obsess over this. I am starting a support group here in NYC and just made up my flyers tonite for the first meeting scheduled for May 17th Well, I'm going to try to organize my thoughts about this Interstim thing so I can post all my questions here as well as get all the info I can get out of my uro next week. Thanks again for the support! I totally need it.

              -Nancy R

              [This message has been edited by Nancy R (edited 04-24-2001).]

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