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  • sadness over interstim

    I have been having so much more additional pain since I had my Interstim put in a few months ago. I have repeatedly gone back to the surgeon that did my implant. He did x-rays and said that everything looked like it was in the right place. I really want to trust him, but he cannot explain my additional pain. I am about ready to give up. I am so tired of hurting. Who else has felt like they were tired of trying. I cannot prove that the interstim has anything to do with my worsening pain, so I am kind-of stuck in limbo, not knowing what to do. I just want the pain to go away. Is that too much to ask?!!!! He has put me on more Neurontin and additional Elavil at night to help me sleep. I am trying to get an appointment with a pain management place. Please pray for me. I cannot take much more.

  • #2
    Hi Lissa,
    I am so sorry to hear that you are not feeling well. I had terrible pain about two years ago, due mostly to stress, I believe. Yes, I wished many times that I would not wake up in the morning, and when I did, felt that it was just another day to try to plod through. [img]frown.gif[/img] Could you get a second opinion? I know that you probably feel reluctant to do that, but being in pain all of the time is just not something that you should have to bear. Would your insurance pay for another consultation? That would be something you might want to check out. I really am at a loss as to what else to say, but please know that you are not alone in this horrible thing called IC! And yes, I will pray for you. God bless!
    <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />
    Mary

    Comment


    • #3
      If you feel that the interstim might be causing more pain my suggestion would be to seek the opinion of a neurologist. These doctors are expert in dealing with problems of the nerves.

      Most insurance companies will cover a second opinion. If you have a managed care plan you will need a referral from your primary care physician.

      Sending healing thoughts,
      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/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      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

      Comment


      • #4
        I feel so sorry for you an I am in so problems you are in. I talk with my primary doctor today and she had gotten a letter from the doctor that I got the second oppion from. He said that the interstim was not working for me and he was not into treating chronic pain. I do not know how he can say that to me and I think he does not know why I am having problems with cramping and the tingley. I did not have this problems before the interstim and when I turn the interstim off he got better. Then when I turned it back on Sat. my problems got worse but I was getting chocking behind my IPG site. So I'm really upset about what he said. I'm trying to get hold of my doctor that put the interstim in!! I am getting tired of not getting any answer and I wish that they could get my answer why is not working like it use to. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> I am going to call the doctor office every day till I get to talk with him. I am so sorry for you Lisa and I hope you can get apt real soon with a pain doctor!!

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        • #5
          I have considered going to a neurologist. Aren't most doctors reluctant to say that another doctor may have done something wrong? How do they figure out if there is nerve damage? My uroligist in my hometown brought up the fact that the leads could be part of my problem. I just don't know what to do.

          Comment


          • #6
            HI LISSA,

            Comment


            • #7
              HI LISSA, I HAVEN'T HAD ANY EXPERIENCE WITH INTERSTIMS, BUT I HAVE HAD THE EXPERIENCE WITH FEELING AT WITS END WITH THE PAIN...IT'S SCAREY AND EXHAUSTING...I REMEMBER CALLING A FRIEND OF MINE YEARS AGO, AND TELLING HER TO TALK ME THROUGHT THE NEXT TEN MINUTES, BECAUSE I DIDN'T KNOW IF I COULD GET THROUGH THEM...THE IMPORTANT THING TO REMEMBER IS THAT YOU WILL GET THROUGH THEM...I'VE BEEN DEALING WITH IC FOR 16 YEARS NOW...SOME VERY BAD DAYS...SOME BLESSED TIMES OF REMISSION...I SURVIVED IT ALL AND SO WILL YOU...YOU HAVE A DIAGNOSIS, WHICH I DIDN'T HAVE FOR THE FIRST 11 YEARS (I WAS TOLD TWICE TO GO SEE A PSYCHIATRIST...I WENT TO 17 DOCTORS BEFORE ONE OF THEM ASSURED ME I WASN'T NUTS)...GETTING THE DIAGNOSIS IS THE FIRST AND MAJOR STEP...NOW IT'S FINDING OUT WHAT WILL HELP YOU...AND SOMETHING WILL...IF NOT THE INTERSTIM, THEN SOMETHING ELSE...THERE ARE MORE AND MORE DOCTORS OUT THERE WHO ARE BECOMING EXPERTS IN THIS FIELD...YOU MUST NOT GIVE UP...DO WHAT YOU MUST DO...TO GET THROUGH EACH DAY AS BEST YOU CAN...AND REMAIN HOPEFUL THAT SOMETHING, AND SOMEBODY IS OUT THERE WHO WILL HELP YOU...DON'T GIVE UP...I WAS A TEACHER, AND QUIT, AND TO HELP ME GET MY MIND OFF OF THE PAIN, I STARTED DRAWING, AND NOW HAVE MY OWN BUSINESS OUT OF MY HOME DOING HOME PORTRAITS FOR PEOPLE...I REALIZED THAT SOME GOOD DOES COME OUT OF OUR TRIALS...I ALSO HAND THIS OVER TO GOD ALOT...AND ANTIDEPRESSANTS HAVE HELPED AS WELL....HOPE THIS HELPS YOU TO HANG IN......CELESTRA

              Comment


              • #8
                I do agree that doctors are sometimes reluctant to say another doctor did something "wrong." But you might approach it this way --- that you have concern that the leads might have moved to where they could cause a problem --- without being critical of the doctor who placed them. You could tell the neuro that you would like his opinion regarding whether the leads could be causing a problem where they are.

                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/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                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

                Comment

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