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How many have had interstim removed?????

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  • How many have had interstim removed?????

    I have heard that there have been other people on the board that have been mislead and told the interstim would help there pain and it didnt. I am just wondering how many there are, and who has went ahead and had the devise removed. I am so frusterated that I was mislead. I am also so confused. I am mad that I was lied to, but I dont know if I should have the interstim removed, or try to keep it in and wait and see if it might one day help with my pain. I hate my rep. He is lieing to other people now. I dont even want to deal with him anymore at all, and I would love nothing more than to piss him off by making him take this thing out. But then there is still the wonder in my head that it might start helping me one day.
    Also, I have found out that my leads 0 and 1 are not working at all. So if I do decide to keep this in, I have to go through another surgery anyway to have those wires redone. I dont know what to do. My body is so tired from the 3 surgeries in 1 month, and the last one was in Oct. I just cant seem to totally recover from it. I know it doesnt matter which dedision I make, I will have to have surgery either way, but if I decide to keep it, and it never works, than there's another surgery to remove it. GGGGGGrrrrrrr, I dont know what to do. I wish someone could just make my decision for me. I wish my rep hadent lied to me, and my doc hadnt went along with him. I dont know who to trust anymore. All I know is that I trust the people who know how I feel, and they dont. Help!!!!!! [img]confused.gif[/img] [img]confused.gif[/img]
    Hope everyone is having good poddy days!!!!!!!

    ~Jasmine~

  • #2
    Jasmine,
    I am sorry that you have had to go through so much. I understand that it is not helping you with pain. Did you suffer with any frequency? Urgency? Is that better at all. If it has helped with only half of the equatationn for you maybe it is worth keeping. You might have to find pain help some other place.
    The interstim has helped me a little with pain but it did take almost a year. Although, I still have painful flairs and I must watch what I eat and drink. Sex will also send me into a painful flair.
    I can uderstand how you feel about surgery I had 5 major surgeries in 3 years. I even cry at physicals now because I am scared they will find something else wrong. They have again and I am going through some heart testing. Best of luck

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    • #3
      Hi Jasmine:

      Have you had your Implant change on to another electrode, they are four of them..
      Your setting may be to low...

      My setting on my Implant( pacemaker) is set at 4.5 volage and my remote control every time I push it up it is at 1.5 volage..
      Also my Implant has a setting to shut off every 5 second..
      Why don't you ask your doctor these questions and find out which electrode is working and what your setting are..
      Sometime the setting just maybe to low to get any kind of results you are looking for..

      It took me a good YEAR to get the setting on my InterStim to even to get to where I was getting great results..

      Also "patients" is a very big thing in this to Jasmine!!!

      Sending a big (((((((((((((((((((HUG))))))))))))))))

      ~~~Debbie~~~~
      Thinking positive has got me through to another day!!

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      • #4
        Debbie,
        My rep tried everything to get 0 and 1 to work, and he said that they must have come unattached. He turned them as high as they go, and I felt nothing. The only setting that I feel at all is 1 negative 2 positive, and 0 and 3 off. He said that the only one that is doing anything is the 2. The 3 hurts in my tailbone. They think the reason for it coming apart is that I yanked the first trial out of me, and I guess the site was damaged pretty bad. I guess I am just a problem. [img]frown.gif[/img]
        Hope everyone is having good poddy days!!!!!!!

        ~Jasmine~

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        • #5
          I too have the Interstim, and I too have had many problems with it, I have had 3 different repairs done.
          I have my initial surgery to do the Implant in Nov. 2000. Somehow the unit got fluid inside and was shocking the poop out of me. It worked great up until that point. So, in March 2001 they replaced the unit and moved my leads. I have had not had any relief since then. For some reason they just cannot get it to work for me now.
          Finally after a few xrays the dr. found that my leads were completely disconnected. So, in Nov. 2001 I went in and they went in a reattatched the leads. I am just now starting to see a difference and with that it is not much. But some - so I just keep hoping and praying that this will eventually work out.
          I wanted to just have it taken out but....
          I will just keep biting my lip until I cannot take it anymore.
          I have had some many surgeries and procedures I have lost count. I think my doctor is trying to break a record or something. You like how many surgeries can you perform on one single patient.
          My last surgery on 1-08-02 he laughed because the surgery room staff and I are on first name basis now.
          Hope everyone is doing well.
          We have to stick together and keep sharing out experinces.

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          • #6
            Hi
            Most of you already know me or have heard my story. I had a trial and surgery to implant first in August 2000, it worked a couple weeks and stopped so after months of tuneups we did antoher trial and revision surgery in Jan 2001, and same thing happened. So a third surgery was done in Sept of 2001, and this time a staged trial and surgery. I had better luck and it worked for about a month, and then became infected. After a couple months and a couple hospitalizations I had to have my implant removed...
            So now I am recovering from the surgery and waiting for something new to try...
            Dede

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