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I am getting reasearch surgery...help!

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  • I am getting reasearch surgery...help!

    I am getting a bion implanted that is supposed to send ectrodes through a nerve to my bladder. It is all free, but is is research! I don't know exactly how siilar it is to the interstim, but I am curious to hear from people that have had interstim or similar surgeries just so I can see what I may be dealing with. I have info. on side effects and what-not, but I really need to hear from women with personal experience. If anyone can help it will be greatly appreciated!!

    Thank you!!

    Liz
    Liz

  • #2
    Bion study

    Hi:

    I heard of this from my urologist last month. He is coordinating a study on this as well. It is for frequency and urgency. He didn't mention pain, so I take it is not? I specifically asked about retention, since I have a severe retention problem that even blows him away, and he said, he didn't know, but it probably would. I didn't ask to participate, he knows my drive is about 80 miles round trip, many after the trial. I hear it is inserted in an office procedure no surgery. Good luck, keep us informed. I will ask him this month more about it. I have an appt tommorow, for my monthly oxycontin refill. Thank god!

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    • #3
      You are correct, the bion study is for frequency and urgency, but my urologist and the research nurse (who I worked with last summer on an RTX study) both think it will really help with my pain and my IBS. I understand the drive you have to see your doctor. My drive is not quite 80 miles but, it is about 30 round trip. Thank you again for your support!!
      Liz

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      • #4
        One bit of advice. If this involves implanting any kind of device, I suggest you get, in writing, an agreement that if you have problems with it that it will be removed without charge to you.

        Good luck!

        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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        • #5
          I will be involved in this research project for 5 yrs. After that, if the battery goes dead or I need the bion removed it is my responsibility. That is the only thing I do not like, but I am so desperate and so broke that I have to do something! Also, this bion is also approved already in Europe and has been helping people there. Thank you for everyone's support!!
          Liz

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          • #6
            sounds pretty close to the interstim.. I agree with Donna...
            Did your dr tell you it's like the interstim and explain to you what it is?
            Where it is going to be implanted at?
            Is there a trial to test it first, before they implant it?
            Is it adjustable for reprogramming like the interstim?
            Will you remove it if I want it removed?
            How long is surgery and recovery?
            Is there any one who has this and dose it work?
            Is this outpatient surgery?
            Will you give me IV anti's before the surgery, and an rx to fill after to prevent infection?
            there are so many questions to ask before you have a surgery.. just want to make sure that you are not going in blindfolded.. My uro was great.. I had a list of questions and we talked about tihngs I didn't think to write down...
            hugs and best wishes
            Brat



            I have the interstim you can read all about it in my patient story at the bottom of the page.....
            'The will of God will never take you where the Grace of God will not protect you.'

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            • #7
              Re: I am getting reasearch surgery...help!

              I signed a consent in 2004, they revised it in 2005/2006, and in 2012, they tried to get me to sign, stating I can die from the implant. I did NOT sign! I still have my Bion but it's turned off!

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