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  • Thinkingn of insterm need sucess and failure stories

    Hi, nothing is working for me, not the meds. The uro and I talked today about the insterm. I told him to set up the insterim surgery. I need to hear sucess and fialure stories. He gave me some numbers to call and his patinets have been very happy with them excpet for one lady and she was elderly. He said my bladder is constanlty playing tug of war and spamsing. He said elerdly lady has different neverves than us younger people. Please pm me and post to me so I know.

    How did it work you? Are you happy with the insterim? Can you sleep through the night without getting up to go pee?\

    Going to do alot of reserach on this. Please I need some help. Thanks in advance.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie

  • #2
    As I told you, I know nothing about the interstim and how it works. I know how upset you are, and wish I could help. Best wishes as you sort out the info. I will pray for you hun...Call me, or pm if you want to...I am here...Love Ya, Sheri grouphug
    Wishing you the best, today, tomorrow, and always! Sheri G

    Comment


    • #3
      auntiedebbie,
      hello there...I have had IC for sometime now..I also lived life with it and meds and lived life with interstim. Far too many reprogrammings and far too many surgeries to move the interstim from one side to the other. It never changed how my IC was and actually I was in more pain and up more to peeeeeeeeeeeeee. It is not for pain control and I hope that others have told you that.
      I no longer have the interstim but suffer the consequences of it forever now. I would say just research it thoroughly on the boards here and beyond the boards..you can contact the FDA..you can log onto research from Stanford University and other large Universities for information on it and do as you are already doing..Keep Talking To Those Whom Have Had or Do Have It. In the end only you can make the decision but at least you will be able to say to yourself if something goes wrong that you researched it to the fullest of your ability.
      Take care,
      whitebuffalo hi
      whitebuffalo

      Comment


      • #4
        Hey Deb,

        Well you already know how I feel about my Interstim. It's the best thing I've ever done for my IC, and I'd shout it from the roof tops if I wasn't afraid of heights. lmao

        Anyway, I'm glad you are doing your research as it is not for everyone. My spasms are gone, and I am glad of that. My IC doesn't irritate me at night, but I do take Elavil still (for fibro and it still helps with IC).

        If you have any questions, you know how to reach me!

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

        Comment


        • #5
          Jess I sent you a pm. I know it is up to me have this done and the uro thinks it will help me greatly. we have trieds med to no avail. thanks for the quick reponses.
          Hang in there , There is hope.
          There is hope. Prayer works.

          Love, Debbie

          Comment


          • #6
            Hi Deb... grouphug This really has nothing to do with interstim itself, but as I was reading your responses here, I got to thinking about when I was considering DMSO. So many people said it was horrible, and they would never do it again, a few said it wasn't that bad...I was scared and confused, but because my symptoms were so bad, I decided to try it and it did help. I guess what I am saying is that asking others about their experiences is good, but cannot be the only thing you consider when you make a decision...You know I am here and will stand behind you whatever you decide to do! grouphug kissing hi
            Wishing you the best, today, tomorrow, and always! Sheri G

            Comment


            • #7
              I agree with Sheri, I didn't choose the surgery on anyone's opinion. I had to do it because I wanted to feel better. And it worked. So go with your gut!
              Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

              Comment


              • #8
                hi Deb
                I posted to you on your uro post pm me or email me if you need info
                Brat
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  Debbie, I posted on your other post. Interstim has really changed my life. It realy helped the frequency and urgency. When my first one quit working because the lead had moved, I fought my doctor to get him to do a revision. I am so glad that I did because now I have relief again. I just had the new one put in on Dec 2 and I am still very sore. I cannot sit up straight at all. I have to mostly lay down. If I had it to do all over again I wouldn't change a thing. grouphug
                  Louise
                  West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                  [email protected]

                  Comment


                  • #10
                    Thanks for your rrepsonses. I am praying. I am doing alot of reserach. I know this has to be my decesion alone. I want to feel better.
                    Hang in there , There is hope.
                    There is hope. Prayer works.

                    Love, Debbie

                    Comment


                    • #11
                      Louise,
                      thats great I am so glad that you got a new one that works... I would do this all again too.. just having the urgency and frequuency cur in half has made life easier for me
                      sorry you are still in pain, sending you hugs
                      Brat
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment


                      • #12
                        Thankyou all for your support.

                        I have some questions for you all that have the insterim now since my brain is working lol.


                        Has it made your life better?

                        Has it cut down on the urgency and frequency?

                        Has it cut down on the utis?


                        Can I go to the airport and fly in a plane?

                        Can I still work once everything is implanted? The dr said yes.

                        How long did it take you to recover?

                        was your family and friends supportive?
                        Hang in there , There is hope.
                        There is hope. Prayer works.

                        Love, Debbie

                        Comment


                        • #13
                          Thankyou all for your support.

                          I have some questions for you all that have the insterim now since my brain is working lol.


                          Has it made your life better?

                          Has it cut down on the urgency and frequency?

                          Has it cut down on the utis?


                          Can I go to the airport and fly in a plane?

                          Can I still work once everything is implanted? The dr said yes.

                          How long did it take you to recover?

                          was your family and friends supportive?
                          Hang in there , There is hope.
                          There is hope. Prayer works.

                          Love, Debbie

                          Comment


                          • #14
                            Auntie debbie
                            Has it made your life better?
                            yes it has it has cut my frequency in half, and the urgency is more controlled. I can go places more at ease mentally, because I don't have to pee when I get 2 blocks form home.

                            Has it cut down on the urgency and frequency?
                            I went from 25 a day and up every hour at night to 10 to 12 a day

                            Has it cut down on the utis?
                            interstim will not help with utis. This one I cannot answer.

                            Can I go to the airport and fly in a plane?
                            sure you will recieve a medical card you tell the people you have a metwl device in you body, no need to say where, and you cannot go thru the security gates, have your card available.

                            Can I still work once everything is implanted? The dr said yes.
                            I am on ssd, but there are others with the interstim that do work.

                            How long did it take you to recover?
                            I had a two week stage implant about 3 days later I was feeling good but stll sat on my hip tail bone area hurt.. after the implant it took a good 2 week because of the insison on my cheek

                            was your family and friends supportive?
                            My Mom was she has IC, and my husband was supportive of my decsion, he just wanted me to be able to sleep and not pee so much.


                            He gets funny once in a while about it and when we talk to some friends he says I put lojack in her hahaha... (lojack is the anti car theft device)

                            Brat
                            'The will of God will never take you where the Grace of God will not protect you.'

                            Comment


                            • #15
                              Cindy, ask Dr Peters about the airport thing. He told me that with the ones they are using, you CAN go thru the metal dectors because there isn't any metal in them now. He did give me a letter incase I set off the detector but I never did.

                              deb~you already know my story with the implant. I don't think it can be stressed enough, make sure you try ALL other types of treatment first. This is a very serious procedure and you can end up with permanent damage that leaves you worse off than when you started.

                              I know that you want to hear both the positive and the negative but most people don't really want to hear the negative. Most of us feel like we've been pushed from this site and now we PM and I don't think that's fair to the girl who is using this surgery as a first coarse of treatment.

                              When I had my original one in Oct of 99 I was so desperate that I would have tried anything. Now, I am in a different frame of mind and I can stop a second and think, "this is my spine I'm dealing with." I think that the surgery still has a long way to go to prove itself as safe.

                              tons of hugs~
                              teri
                              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                              Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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