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  • Chickening out of trial

    Has anyone gone through this? I feel like after everything I have read about this that the fears of getting this done (making me pretty sick I've been throwing up and all) is worse than the idea of just putting up with the pain and frequency. Pain is my worse symptom anyways and this doesn't even help this (even though the Dr told me it does and that makes me nervous too like he doesn't know what he's doing). I have an 18 month old at home and I fear something going wrong with this and effecting my being able to care for him. I don't have much help. I am calling them to cancel my trial coming up because my gut seems to be telling me not to do this. Is there anyone else out there who has gone through these feelings about the neurostim? I mean I have all tyhese fears people in my life will be like well, the pain can't be that bad, etc, etc. It really isn't the case. I have been feeling sicker physically because of the idea of it. I am also under a lot of stress in my personal life right now and just have a bad feeling about this whole thing! I hope to hear from someone who understands these feelings I am having. I am just looking at this spinal surgery lightly. ~Ann
    Facebook- Ann Stockmeyer Rachinger

  • #2
    Sometimes we just have to follow our gut feelings. Have you thought about seeing a different urologist for a second opinion --- and to see if there are perhaps treatment options you haven't tried yet?

    Warm hugs,
    Donna
    Stay safe


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    [3MG]

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    • #3
      I think you are making a wise decision since your IC is mostly pain. I'm currenlty in the decision making process of the inter stim. I have about 50%pain 50% urinary dysfunction. I wonder if I should also consider the pain issue? Well anyways, go with your gut, and everything will be ok. I'm truly sorry you are suffering so bad.
      Erika
      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control

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      • #4
        Anniepie, I cancelled my trial a total of three times. I did't feel my URO gave me enough info to be comfortable with a decision. After I connected with this ICN site, with questions and comments on both side of the fence, did I finally accepted to try it. I spoke with a friend who has had the interstim for 5 years, and is happy with it. My URO referred her to me, and surprise it was a fellow Town Clerk. She needed it for pain and leaking. She is satisfied it is doing the job. It's been only one week since I have had the interstim II implanted, and so far so good. Don't make your decision until you feel comfortable with it. The interstim rep said some women with pain are helped but at this time they can't promise it. Sue

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        • #5
          It would be such a hard decision to make, especially since you read all kinds of different things about it. I think you have to follow your gut - it will be out there if you ever change your mind.
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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          • #6
            I think, if you have this many reservations about the procedure, you should go ahead and cancel. There is no sense making yourself physically ill over this -- listen to your body.

            Also, I can tell you that while my frequency and urgency has been reduced to almost normal most days, I still require pain management. The pain has been reduced some because I'm not constantly feeling the urge and because I'm not constantly irritating my bladder more by sitting and straining, but it has not gone away by any means.
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.

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            • #7
              I too say go you rwith you gut. Interstim is not designed for pain. I did get some pain relief, and did not realize that it did help till it was shut off. I think you are making a wise choice by canceling.
              'The will of God will never take you where the Grace of God will not protect you.'

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              • #8
                Anytime you have to deal with a decision as such with the InterStim, it can be hard choosing what you want done. There have been many stories on here, good and bad, that can totally scare the pants off anyone. But you have to look at all of it good and bad to make your choice and if in your heart it is telling you to wait, then wait. The InterStim is certainly not going anywhere anytime soon, and maybe later on you will feel more comfortable doing it then. Being pushed(which you may not be) into something that is making you physc. ill is not good on anyone....I hope that what you choose will put you heart and mind at ease
                God grant me the serinity to withstand the days ahead!!!

                My myspace link...
                www.myspace.com/patricia_luvs_matt


                Patricia

                In Memory of My Father (Lawerence) 1/25/2007

                Procedures:
                Interstim Sept 2001
                1st InterStim Removal May 2005
                2nd Interstim Implanted May 2005
                2nd InterStim Removed March 2007
                Hysterectomy 1999
                Tubes Tied 1997
                C-Section 1996


                Me and my kids


                Taylor (my daughter) Me and my daughter My son Cody and Taylor

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