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  • Fickle Interstim

    I'm really annoyed. This Interstim is not working the way I'd like it to. I don't know if my nerves become "immune" to the stimulation or what....but I have the stimulation which is OK as long as I don't move much. If I start moving around, my toes curl, my a$$ gets zapped, and the muscle constantly cramps up around the interstim pak.

    What's worse, I mention "immune" because my frequency is outta control. This is crap! Crap! Crap! I've called my Rep again and he'll call back which is fine. Getting these tuneups every 3 months is really a pain, and then the results don't last. Or am I kidding myself into thinking there are results. (???) And I keep finding myself getting my back "stuck" or I get SHARP pain that's so painful, my breath is sucked right out of me... Nobody know what could be causing that...

    I'm mad about having to live like this. Any other aspect of my life I would declare "this is not acceptable" and take the steps and be a total b*tch until the situation is rectified. This whole IC thing is really getting old, I need a vacation (I need a vaction from my bladder--before I rip it out and bury it in the back yard.)

    oops sorry, this turned into a RANT big time! I'm annoyed.....truly annoyed....and sick.....and very, very tired....::::yawn::::::
    y. [img]frown.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

  • #2
    {{{{{{{{{{{{{{{{You}}}}}}}}}}}}}}}}}}}}}

    I wish I could help.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

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    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      {{{{{yvette}}}}} And I was bit&hing about waiting for 4 to 5 weeks between adjustments [img]eek.gif[/img]

      I had a talk with our rep last monday and I told him that when we come for an adjustment we come there with hope....then, we know within a couple of days if the adjustment is going to work or not so we spend the next weeks in depression and dispair. I also told him that him saying "you have to be patient" is gona get him slapped. I have been going for adjustments since the beginning of November and I see the same faces sitting in the office waiting for there 'monthy' tune-up. I envy the girls who have uro's who do their adjustments and don't have to be at the mercy of a medtronics rep because I don't feel that medtronics is holding up to it's end of the bargin.....they want these $40 thousand dollars in our fannies, they should have enough reps to do adjustment as needed [img]mad.gif[/img]

      I am heart sick over this because my first one worked wonders so quickly. Now, this one just doesn't seem to want to kick in.....so, I am looking at the miracle of the device plus the heartbreak of the device.

      I sure do hope you start feeling better......
      sooooooooooooooo sorry this is happening to U~
      teri
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

      Comment


      • #4
        Oh Yvette
        I am so sorry its not working right for you
        I know how frustrating that can be......I just wish I knew the answer for you as to whats going wrong....sometimes I imagine the wire can move and not be in the right spot...I think that what happened for me.

        Dede

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        • #5
          I hear you Yvette,

          I'm in the same boat. Only my problem is pain and frequency and urgency at night. Let me know what Fred has to say about all of this. He has stopped pushing me to get adjustments. There's been 4 already. Nothing helps for night and pain. I wonder what he will have to say about the pain yours is causing your back? How high do you have it up?

          I guess our dream of having this be "the treatment" is out.

          I'll call you this week.


          Hang in there!


          Kara

          Comment


          • #6
            Oh wow! I didn't think anybody posted back to me <blush> [img]redface.gif[/img]

            I'm scheduled april 2nd for a C&H wih chlorpactin.

            And the 9th for the Interstim adjusment. I think I need to have a talk wih my rep. Last we spoke, he asked me which setting worked best..but I don't see the point of revisiting a previous setting which:
            1) Didn't give me the results I wanted
            2) Results that didn't last

            Am I wrong? Or do you think he's going somewhere else with trying a previous setting? Hmmmm I'm perplexed.

            Thanks again everyone...I truly appreciate your good words

            y. [img]frown.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

            Comment


            • #7
              yvette~he should already have the settings you have tried in your file.....HE is the expert, NOT you! And, I don't know about you but within a day my stimulation area has completely moved. Right now I've just got this screw it attitude and will probably make plans to have it removed after the summer is over. I just can't see keeping this hockey puck in my butt if it's not doing any good.
              I can only speak for our rep but at the end of each session, he gets his little type out regarding where we are set, rate, seconds, continuous or on and off etc and it's stapled to our file, along with his had written notes for the session.
              I go nuts because we have to wait for 4 weeks between adjustments. I think that my #1 question to him whould be WHY IT TAKES 8 FRIGGIN' WEEKS FOR YOU [img]mad.gif[/img] [img]mad.gif[/img] [img]mad.gif[/img] [img]mad.gif[/img]
              teri
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

              Comment


              • #8
                Ugh :::::sigh::::: would you beleive he is the only rep for Mass and part of New England. He is being spread pretty thin....they should get more reps per state.(Areas? Counties? Districts? Wards?)

                Hell you're right, he should have these settings recorded. Why try something already done?

                LOL!!! Its like looking in fridge over and over again, when you're hungry...and you keep looking in there repeatedly. As if some NEW food will appear if you keep checking ::::giggles::::

                Maybe if I keep trying the same settings, my a$$ will smarten up and finally submit to the abuse I administer!!! ROTFLMAOSHIPIMP (well not really!) I'm tellin' ya, if I don't laugh at some of this, I'll just end up crying a river...
                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

                Comment


                • #9
                  Geez yvette......I feel so bad for you. I'm kinda wondering if this place I'm calling acceptance is actually 'giving up'??????????
                  Sometimes I think there is a very very fine line between the two.
                  Our rep has a huge area too but if medtronics wants our 40 thousand dollars, it's up to them to make sure we get the follow-up we need. I haven't been posting about my implant cuz right now I don't want to be reminded that I even have it but I WILL say that the company sure as hell has let a LOT of people down and until they decided to give us proper help, others should take a long and hard look before agreeing to this surgery. You could have the BEST uro in the country but he/she can't do you a whole lot of good if the damn thing needs to be adjusted every time you turn around [img]mad.gif[/img]
                  I sure do hope you start feeling better~

                  gentle 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".

                  Comment


                  • #10
                    yvette,
                    I have had some similar problems with my interstim. I know how you feel about wanting to rip your bladder out. All I can say is hang in there.

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