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headaches and spine contortions anyone?

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  • headaches and spine contortions anyone?

    I am new to the message board, but after hearing some of your stories I feel like I am not the only one with problems anymore. After having the stimulator for six months it has stopped working, even after reprograming. Since august I have been experiencing pain in the base of my head the travels down my spinal cord. I have constant nausea and I vomit about five times a week. My spinal cord is out of place in about five different areas and my tail bone is at a ninety degree angle going inward towards my body. I have had swelling in the site of the implant and pain. i have been to two neurologists, I have a wonderful urologist, and now I am going to an endocrnologist to see if I have an autoimmune disease. I wanted to know if there is anyone out there who has experienced these symptoms, because I don't know if they are caused by the stimulator or not? I just know I didn't have the problems before I had it put in. I also had botox put into my bladder and have seen little results. They are going to put more in the next time. Any comments on botox? I would appreciate any help. I have no life! Help!

  • #2
    Welcome to our interstim problems solvers section When I had my original implant done it worked perfect from day one. 18 months later, for no apparent reason, it just quit. After my uro dodging my phone calls for 6 months I had a revision done....that was in Oct of 2001.

    During the sucessful 18 month run, I had constant toe curling but I figured it was worth the price to pay....then pain started moving up my leg and the device quit. When I had the revision, I went thru the staged trial using the other side of the sacral nerve. The trial was a total flop but since everything was already in, we decided to give it a try. IF I can wait until Sept I am having everything removed. I have permanent nerve damage to S1 and have a bag full of new physical problems that just keep growing and growing. Even with the device turned off I am still having pain at both the site of the implant and my tailbone. I thought I had all the pain a person could tolerate until this revision, now my life is a constant hell. Naturally, Medtronics says that the strange symptoms so many of us are experiencing could not be caused from the device...... duha.........we weren't having them before the implant!!!!!!!!!!!!!! All's that's made public are the sucesses, NOT the failures of this device and I believe with my entire being that this is the reason my original uro dumped me. If he dumped me without fixing me, he could use me as a sucess......gotta keep those numbers looking good so they can keep pushing this $40,000. surgery. I've ask the uro I have now if there are off the book records being kept so that eventually the #'s will show the percentage rate of the # of people this device did not work for and he just looked at me and smiled, I took that as a yes.

    I can only speak for myself....I KNEW that this surgery was not perfected. I KNEW it was not okayed for IC. I KNEW I was taking a risk....I just didn't know how big the risk would end up being. I am so hard headed that if I had it all to do over again I probably would but now I don't have that dream embedded in my brain of where I'm going to wake up some morning and everything is going to be okay. I just want this thing out of my a$$ so I can get on with my life and deal with what ever has to be dealt with after that surgery.

    You should be hearing from some others who have had problems and had their devices removed too~

    Wishing you the very very best kissing
    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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    • #3
      Thank you so much for your reply. It makes me feel like I am not crazy, and I am thinking of having it removed myself. I want to know if anyone out there has had one removed, and if so was it painful, and how long was the recovery?
      thanks so much you really made my depressing day so much better. Good luck with you!

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      • #4
        I JUST SENT YOU A PERSONAL MESSAGE AND WOULD REALLY LIKE TO TALK WITH YOU. I HAD DONE THE INTERSTIM PLUS THE BOTOX. TALK WITH YOU SOON. DEBORAH

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        • #5
          Smeagle--------don't give up too soon! I had my implant 9/02. It took 3 programmings & also beginning to take Detrol LA eith it for it to work! On the 1st programming, I had pain running down my leg, but had it reprogrammed which also didn't work, but the #rd time was a charm! Work with your doctor & the representative who programs you. Yes, when mine wasn't a "success", it was VERY discouraging, but thanks to JD, I learned to tell the rep EXACTLY what I was feeling. Along with the Detrol, it is working well. I have a life again-------don't give up yet! Kathy wink

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