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  • Its reprogramming itself!!!!

    Anyone heard of this one????? My interstim is reprogramming itself. My rep will program it so that lead 0 is off, 1 is neg., 2 is pos., and 3 is off. 3 had to be off at all times cause it hurts my tailbone so bad. Well, it will be that way for a couple days and then it will go haywire. I feel the stimulation is my rectem when it is right. Then it will be gone from my rectem and my back will start to hurt really bad. I went to the doc the other day, and they checked it, and it had turned itself to 0,1,2 off and 3 pos. The one that hurts me. I dont understand it. And when it does this, my remote wont work. I cant turn it off or on. I cant turn it up or down. Everything I try to do with the remote just makes the 3 beeps saying that it wont do anything. Ofcourse the docs are bumfuzzled. They have never heard of this before. I dont know why this crazy stuff has to happen to me. They know its not me doing it though, cause I cant reprogram it myself. They are saying they are going to have to take it out and put a new one in. I dont know, whats next!!! GGGGGGRRRRRRR. This thing has made me have my period every other week, and now its makeing my back hurt badddddddd.
    Hope everyone is having good poddy days!!!!!!!

    ~Jasmine~

  • #2
    I don't have an interstim, but it does sound like a mechanical problem with the unit itself. I hope this won't mean more surgery for you.

    I'm sorry to hear about this --- you've had such a difficult time.

    Sending healing thoughts,
    Donna
    Stay safe


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    • #3
      Hi Jasmine:

      It could be just the remote control not working have you try taken out the battery and putting in a new battery???
      I was told never to leave my battery in the remote control, only when I am going to use it, then I placed the battery in and then take it out when done with it!!!!

      Also when my unit STOP working , my doctor said there was loose wires off the pacemaker it self, then they fix that and then found out that my lead wire was crack in half...

      Also Jasmine if you getting stimulation , your InterStim is still working!!!

      I hope they find out your problem, it just might be something small...


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

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      • #4
        I was told that if you use a microwave, to stay 5 meters away. It could change the settings of the stimulation. Maybe it could be something like that. Maybe you work in an area that has equipment that could change the settings...
        I hope that it does not require surgery!!!!!!
        For how long have you had the implant?

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        • #5
          Hi: lucia

          I was never told that, I use my microwave all the time and never had any problems being near it at all.. [img]confused.gif[/img]
          I have had my InterStim Implant for almost three years..
          Did you not get a book with your InterStim Implant???
          It will tell you all about it in the book ok!!!

          The only thing some girls have problems going through the airplace security alarm with their InterStim Implant...


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

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          • #6
            Find out if they demagnitized your interstim. If they didn't a microwave or something else could change the settings. Most of us are demagnitized but check to make sure.

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            • #7
              I changed the battery and it did no difference. Also, after I had it readjusted last week, I came home and tried the remote and it worked fine. Its not it, now its not working again. I asked about the microwave and my rep said that it wont do anything like that to my implant. Its somekindof default in the device. So, tomorrow they are going to figure out what we should do, should we put a new one in, or just take this one out and leave me alone. I think I am voting for leave me alone. I am tired of these surgeries, and its not helping me much anyway. I am just thinking that if I go ahead and have another one put in, its just to wait and see what the next problem will be. Thanks for the thoughts!!!!!
              Hope everyone is having good poddy days!!!!!!!

              ~Jasmine~

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              • #8
                Jasmine,
                do you and hubby have a home theater system? Stuff like that can screw with the implant. My other guess is you have a lemon in your butt. It may need to be replaced (oh joy, eh? [img]rolleyes.gif[/img] )
                can you touch your implant without discomfort, if it was me I would lightly push on it back and forth to see if the stimulation chxs.

                I mean really! ***! I just feel for you Jasmine, I wish I could make you feel better [img]frown.gif[/img]
                Keep us posted on what's going on, k?
                Tons of hugs,
                y. [img]smile.gif[/img]
                Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

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                • #9
                  I received a small manual "you and your Intrestim patient programmer". To tell you the truth, I have used the microwave, not 5 mts. away for the first 3 months. In my last adjustment, I asked my doctor what should I avoid to prevent the system to mess up, he told me to avoid airport security systems, and he mentiones this, he doesn't want to take any risks with a damage to the system...

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                  • #10
                    Its 9:17 am, I have to see rep at 12:30 pm. I am so nervous. I didnt sleep last night, it was hurting my tailbone so bad. It feels like someone is in there squeezing my back. I honestly dont know what I am going to do. Yvette, we dont have a home theater. I thought that maybe my computer might be messing with it, so from Friday after I went, I didnt turn it on untill it changed again. So its not the puter. Actually, I know when it changed. I was on the highway driving, and all the sudden I just lost the stimulation where I usually feel it and my back started hurting. I dont understand. I have normal speakers in my truck, and they are way in the back. (its a blazer), so they are not even near me when I am driving. I even turned the little front ones off cause I was scared that it might be them. I dont turn the radio up loud either. It just changed for no reason. I have a lemon.......lol. I either have to laugh, or I will cry. So, I am just going to take this with a grain of salt like I do everything else, and hope for the best. That is that they wont have to do surgery. Wish me luck all, and thanks for being such good friends. I will post what happens tonight when I get home.
                    Love ya all..... and hoping you all are having pain free days!!!!!! [img]wink.gif[/img]
                    Hope everyone is having good poddy days!!!!!!!

                    ~Jasmine~

                    Comment


                    • #11
                      Jasmine!!!!

                      I'M SO SORRY TO HEAR THIS!!!!!!!!!!!!!!!!

                      My thoughts and prayers are with you!!!

                      I've been through a lot of S*** with this Interstim but now it's working. I've been going every 4-5 hours for the past week. The reason I'm throwing this your way, maybe you'll have better luck if they put a new one in. It's sucks to have to go back into surgery but maybe something really good can come out of it.

                      Also, my stimulation changes based on what I am doing. Sometimes I feel it vaginally/rectally, sometimes I feel it in my leg and toes...........it's really weird.

                      I hope they can get it straightened out soon!!!!!!!!!!!!

                      I wish I could come over there and be with you during this HORRIBLE time!


                      Please know that I'll be here no matter what happens! I've apprecitated everything you have done to support me on these boards.


                      Love and A HUGE HUG to you Jasmine!!!!


                      Kara

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                      • #12
                        Thankyou Kara,
                        That was so sweet. Maybe something good will come out of this. I am trying not to get down, but I am mostly just scared. I know that if I have to have it removed totally, than I will have a big hold that I will have to pack, and I dont want to do that. The thought of it makes me cringe. Somewhere in there, there is a wire shorting out, and we dont know where or why. I havent heard from my doc or my rep yet. One of them should call today. I hope so, this waiting is making me crazy.
                        My hubby took me out last night to try to get my mind off it. We had a nice dinner, and then we went and looked at some new televisions. We are thinking of buying a new big screen with our tax money. I kindof forgot about the whole mess while we were out, and it was really nice being out away from the kids and everything. I dont get that much.
                        I am so glad that your interstim is doing good for you now. Mine did help with the frequency. I am feeling that now. I didnt realize how much it helped untill I dont have it anymore. Its shut off. I hope they can just reset it or something.... that would be nice.
                        Well, hope you keep having good poddy days.....lol. Take care, and thanks for being there for me!!!!!!
                        Hope everyone is having good poddy days!!!!!!!

                        ~Jasmine~

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