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My Urologist just gave me a recommendation for the pacemaker implant...

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  • My Urologist just gave me a recommendation for the pacemaker implant...

    I am assuming that is the Sacral Nerve Stimulation?

    I have never had a "surgery" and from what my urologist told me she believes my endoscopy did not include hydrodistention because the doctor that was doing it was pretty sure it was not advised and he actually called her to discuss my case while he was doing it. The lesions he found worried him so much he biopsied them and then was surprised to find they were not necrotic.

    I've also been doing pelvic floor physical therapy for several weeks now. I keep a void diary, with additional commentary on whether things have reasons to sabotage my strategy to hold it for longer. So I still have a lot of days that are awful and several that are vastly improved. Pain wise I'm doing much better than I was after the Endoscopy, but probably not hugely different than prior to it, aside from taking meds to control the pain. I think the Valium is helping the physical therapy go much better and soon my therapist said she will start to do internal work since she's definitely seeing more improvement in getting my abdomen to have a lot less tension (she described it as like a trampoline with a series of bungee cords under it when she started). Now there's nearly no sign of the trampoline tension and only a few bungee cords.

    I asked my therapist about whether she had advice. She said she has had patients with miraculous results, and that her own personal thinking is that putting devices in the body is a big no no, however when she was training to be a physical therapist an old injury to her wrist started to act up and since she would be required to pull and lift patients she could not ignore that her wrist needed more stability and she went with a surgery that gave her a fix to the ligament that had been damaged which sort of was against her own personal rule and it might not have worked.

    So the fact that this device has the option to have a trial run for a week to know if it works before you go all in is a big point in its favor for her. And despite her personal feelings about devices in the body, she said if she had IC, she would be getting the device yesterday. Obviously she was not trying to pressure me into it, she was only explaining that it's had such positive effects that she's seen that it overrides her own personal thinking about this sort of thing.

    I think she may have some concerns because it isn't understood WHY it helps. But the fact that it does help and does it so well and so often, just makes it feel stupid to not at least give the trial run.

    I have three months to research and continue therapy and see how things are with Elmiron at it's full effectiveness.

    I guess my biggest fear is that if there isn't an understanding why it helps that is a downside because something could change about what they know in the future, and either I may have to have it removed and sort of go back to the daily grind of figuring out the right levels of pain and urgency management.

    I also worry, because I don't trust insurance companies, that if they do approve the device, they will then feel Elmiron is no longer necessary. And the way I understand it, Elmiron is a management drug and without it (and the pain not being there to indicate there's a problem because of the device) my bladder could become very damaged. I don't however believe insurance companies see it from the same perspective. And since stress is a big factor in management if I should still need Elmiron, after the device is implanted as I believe I will and am denied it being necessary anymore, THEN the stress could overwhelm the device's effectiveness. Also I assume it's still possible to flare and need things like Uribel, Valium or Elavil. Since Elavil and Valium are both fairly cheap I don't suspect the insurance to ever reject a claim like that. Also I think if I wanted more pain medication options my doctor is open to that, and they would rather manage pain with typical meds than actually helping the overall condition.

    In any case, I was just wondering, are there any horror stories where the trial run went great and afterwards the permanent situation turned bad. I know the device also has gotten upgraded a bunch as well, because during Fellowship my urologist said she was against it and it was only after the improvements made that she became a believer in it's effectiveness.