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  • Thinking about removal

    I am looking for some opinions and advice. I am seriously thinking about having my interstim removed. I have it off pretty much all the time now. When I go to the doc and he tries to re adjust it, it just never feels right, and it seems it doesn't realy help. On or off Is till have dificulty urinating, urgency and frequency. And the pain, well you all know it didn't do much for that. I am truly frustrated because I really wanted it to work and now that area aches if you know what I mean, it is also very sensitive, not to mention lumpy feeling. I don't know guys, if I am not even using it, what is the point in having it in. But then there is the other part of me that is scared if I have it removed things will become worse. Very confused....
    Carlye

  • #2
    ((((((((((((((((Carlye))))))))))))))))))))))))

    I know you are frustrated and confused just follow your heart Carlye, only you know the best what to do....

    I could not wish anyone more then you Carlye all the best in your health and happiness my friend!!!


    Tender Hugs: Debbie
    Thinking positive has got me through to another day!!

    Comment


    • #3
      how many adjustments have you tried?, there are some people around this board that found good results after 1 year!, you should try as many as possible before removing it, I have not found good results yet, but I'm still confident that there is an adjustment that would be the right one for me ( I HOPE SO!). I have to travel by airplane for my adjustments, but I'm praying that the next one ( In 1 1/2 months ) would be the one that helps my urgency!
      I hope the best for you!, and be patient ( I learn this from the interstim people around here)

      Comment


      • #4
        I wish I had an answer for you, but this is a decision you'll have to make. I do understand how you are feeling --- you approached this with so much hope.

        There are people who post here regularly who have had their interstims removed. Hopefully, you'll hear from some of them.

        Whatever your decision, I wish you only the best.

        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


        • #5
          I do not understand why you ladies are not going to get a pain pump. Why don't the ladies that are having problems with the interstim get in touch with Medtronics and see how easy it is, and the urgency and frequency and mostly the pain is way better from the time I got the implant, it has been a life saver. Of course there are adjustments to get the right amount morphine into the bladder. as time goes by and we adjust to the doseage of morphine, they just use a litte mouse type thing to click it into the computer and up your dosage as they see fit.I do not know what the hold up is. I would not be alive if I did not have mine.If anyone has questions you can contact me at [email protected] GOOD LUCK [img]frown.gif[/img]
          Sue

          Comment


          • #6
            Unfortunately, pain pumps aren't the answer for everyone. I am very glad it has been so good for you.

            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


            • #7
              Hi,
              I had an interstim for 3 1/2 years. I had ok results. I was probably 50% better. Then for some reason it quit working. We tried many different adjustments, but nothing worked. My uro said he would try to revise it with surgery, but after 2 surgeries for it already, I decided not to. Maybe if I had complete relief, but I never did. Anyway, I needed a MRI. They had to take it out in order to do that. I am glad I had it removed. I didn't like having something foreign in me if I wasn't using it. My hip is still a little bumpy where it was. I guess because the pocket is still there. I was hoping to not have the bumpiness. The removal was a little more than I thought. It took a while for me to recover. You have those incisionsss again you know! You can e-mail me if you like. Good luck!
              Julie [img]rolleyes.gif[/img]
              "Don't sweat the small stuff."

              Comment


              • #8
                Hi all interstim friends,I had a problem with my interstim --it stopped working after 5-6 months. Doctor did x-rays and my lead had moved away from the nerve( No answers why?)He show me on the x-ray,so he replaced the lead and I`m working better again.It isn`t as great as the first implant,but better then not having it. Maybe this has already been concered in your cases. Just a thought if you had releif in the past I would question it before I had it removed. Best wishes,Sheryl [img]smile.gif[/img]

                Comment


                • #9
                  Carly,
                  OK, not trying to down the interstim, but I feel GGGRRRREEEEEAAAAATTTT, since I had it removed. Pain is still there from the removal, and I still get the shooting pain down my leg to my foot, but I dont have the hockey puck in my back anymore, and it was soooooo uncomfortable. I love that it is gone. I hope you figure out what you want to do. I know how much pain you are in. Sending some healing hugs!!!!!
                  Hope everyone is having good poddy days!!!!!!!

                  ~Jasmine~

                  Comment


                  • #10
                    My interstim story is long and complicated, but perhaps my opinon will help. I had a full implant done without a trail and it never helped because it was in a location that didn't do much for me. After that I went back and had the trial done and found that I got some relief from the frequency, my only real problem. After I had the temporary implant in for the week of the trial I started to think maybe I wans't getting all that much relief, but afdter taking it out I felt much worse and realized that in fact the interstim was helping just not as much as I would have liked. I think it your case before having the surgery it would be smart to complete a voiding diary with the device on and then with it off to make if you are concerned that taking it out might make you feel worse. As a side note I understand people not liking having a bump from the interstim because I am skinny and have a big bump, but I can't really understand all the complaining about the bump. If the device helped feel better and gave me back the parts of my life that I am sacrificing at the moment I'd let them implant it on my head. I hope that doesn't come off as being to insensative. Maybe it's differnt because I am a man. On a side side note I don't know if anyone saw 60 minutes a few weeks ago, but they are now using the very same interstim device to treat the shaking that comes with parkinsons disease. The lead is implanted in the brain and the device from what I saw goes around the should blade. Very amazing stuff. Heres hoping all of us feel better soon.

                    Comment


                    • #11
                      Just a thought, and not that you are even considering this, but my doctor recommended keeping my InterStim in as it may help correct any phantom pain messages after my bladder is removed. ( I do not recommend this surgery to anyone who has not done EVERYTHING else first and is willing to take on all of the potential complications that the surgery could entail) I don't entirely understand this, but since he could not find a case where the patient still had an intact InterStim unit in after cystectomy, maybe there will be something to it.

                      Another thought that I had early on when it was apparent that my InterStim was not helping....with the way technology is, I thought that maybe at some point they may develop an "upgrade" that could possibly help. I knew that if I had the unit removed, my insurance company (who actually paid for the one I have now) would never pay for a second one. They would however, be likely to pay for an "upgrade".

                      Just a few thoughts.
                      Karen

                      Comment


                      • #12
                        IC Man,
                        I think that people who do not get results are trying to look on the brightside that if they remove the interstim they won't have to deal with the bump.

                        I have had my interstim "bump" for almost 3 years, and yes it gets uncomfortable from time to time. But I happily endure an achy bump for the freedom from the toilet that the interstim offers. I can't imagine anyone with good interstim results would have it removed just because of the bump and discomfort from it. Sorry you did not experience great results with it. Ruth

                        Comment


                        • #13
                          IC Man,
                          I think that people who do not get results are trying to look on the brightside that if they remove the interstim they won't have to deal with the bump.

                          I have had my interstim "bump" for almost 3 years, and yes it gets uncomfortable from time to time. But I happily endure an achy bump for the freedom from the toilet that the interstim offers. I can't imagine anyone with good interstim results would have it removed just because of the bump and discomfort from it. Sorry you did not experience great results with it. Ruth

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