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Those of us with serious interstim damage

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  • Those of us with serious interstim damage

    Where are we all at? I ask myself repeatedly why don't we post on here to help one another as well as sending private emails to one another or calling one another........I can answer this as I think it is that we soon find out that there is no place for us on here....I have said that before and now am convinced more than ever....that is a sad fact,yet true as we talk to each other by private emails and you won't see us post on here anymore....I am talking those of us with the serious damage. I also see this as a place to advertise for Medtronic when it is kept one sided like so many want....that is also sad because I thought this was a site for patients not reps of a company. I seldom post now as it is made clear to many of us that we eventually become black balled sort of speak....since there are so many with damage....and we are talking alot in numbers.....and they are not one here. There is nothing wrong with both sides of this issue and nothing wrong with those of us that have injury in how we feel about it. These feelings I hear and read are legitimate and each and every one of us deserve the right to feel how we do until we come to terms with it on our time schedule. We can't do that on even the success story on the home page is basically for the benefit of interstim....what about the stories of those who have changed lives is not make believe for many.

  • #2
    I'm really sorry you feel this way. The reason this board was started was for people like you --- and people considering this type of therapy do need to see both the good and the bad.

    Sending an encouraging hug,
    Stay safe

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    • #3
      I agree with Donna on this one. It is so important to hear the good, the bad and the ugly. Even though I have had this disease for years, I am just now trying to get some good treatment for a better quality of life. My dr. mentioned this treatment. Now I know how I feel about it but it takes this information getting out there for people to make their own choices.

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      • #4
        I agree with Donna that everbody needs to see the both sides of the store of the interstim. There is alot about the interstim that people do not about.


        • #5
          This site is hardly an advertisement for Medtronics. In fact this site has tended to be pretty anti-interstim from the get go. It is the successes who no longer feel comfortable posting here, myself included. I have sent my story several times and it somehow doesn't rate posting permanently like the story of the woman who suffered great pain during the procedure but experienced success as well. (Maybe because my implant was successful and not excruciating it might be too positive and sucessful for posting on an anti-interstim site) And that's okay. It is not my site. I have submitted guidelines for what the interstim can and can not do, how to evaluate the research,etc, again, it has never been posted). And that is fine too. It is not my site. I know the interstim can help but I also beleive all of you who have ben harmed by it.

          Those of you with major harm need the support of this board and I am happy to vacate it for you all. I just find it hard to beleive you feel you can't get it on this board. Everyone here is caring and supportive of what you have gone through and I wish you only healing.


          P.S. I have asked once before that the negative MAUDE data be posted here for those of us who can't access it ourselves. I am a success but I am not an ostrich with my head in the sand and really would like to read the specifics of the 18 cases. Thanks.


          • #6
            Thank you seems when I post the other side it makes so many angry that you start to feel you are not wanted here.
            So I seldom say anything anymore...and figure well if some want to hear only the good and go into this interstim without knowing all then it is useless and there will just be more of those that say,"I wish I would of known."
            I am doing fine since my removal and my MRI showed the damage I have...Deborah b....I am going into physical therapy and starting on Celebrex that is used for arthritis to help hold down inflamation in my spine and so on.
            This does not matter to me much right now as I am getting married to the most wonderful man. He asked me a week or so back. He is 50 and I am 49 and we are very happy. He is wonderful and is the most caring,sensitive man I have ever known....he is a rancher and that is how these ranchers are. He also has bladder probs and has to peeeeeeeee more than we do....he was exposed to Agent Orange in Viet Nam and they think his urinary probs and his sons came from that. He is a disabled Marine and a wonderful person......I am so happy and because we both have health probs and definately a who gets to the bathroom first....there is no concern about one being sick and the other he has broken his back twice and has spine probs also...we are very happy and just want to live out our lives together and doing things we enjoy and a occasional ride in the mountains on horseback when our bodies allow. He is so supportive and I am of him. I will be proud to stand beside this man and take the vows to be his wife. He served our country well and carries metal and has a purple heart from his time in the military....but actually this man has a heart of gold.
            Bye for now as my time is very devoted to him.


            • #7
              Well Chady I think you have got it all wrong , I am really sorry that you feel the way you do..
              I don't think anyone of us ones having wonderful results with the InterStim are saying any bad things to you or are angry at you for sharing what you have been through also !!
              I really am sorry that you went through all the problems you have with the InterStim...

              I don't think we are promoting Medtronic in any way on this board. [img]confused.gif[/img] [img]confused.gif[/img]

              Yes this board was formed for people having problems with the InterStim!!
              I don't know where you are coming from sometimes at all but I know you have been through alot and I am so sorry that you feel this way Chady!!!

              I really wish you all the best in your health and happiness with your new husband to be!!!

              Thinking positive has got me through to another day!!