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  • Surgery Today

    Got my new interstim today. I got one in 2006 but it died about a month ago. Surgery was brutal getting old one out and am very very sore now but the new ones are really cool. Smaller and have more settings and choices of stimulations. Can't wait to play with it. Just gotta get over the surgery part first!
    Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
    _____________________________

    DX: IC - November 2002 after hysterectomy
    Interstim implanted March 2006 - died May 2011
    Interstim replacement June 2011
    Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
    Docs: Pain management doc, urologist, family practice

  • #2
    I wish you a speedy recovery.
    <center>
    <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
    </center>

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    • #3
      Interstim

      Hi,
      Glad to hear your surgery went well. Mine also died after six years. I had my last interstim inserted in 2009. I don't have any choices on mine except highter and lower and off and on. It sounds like they are different now.
      Linda

      Comment


      • #4
        I'm glad you're doing well.


        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

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        • #5
          I sure am glad everything went all right. The new models really do seem to be a lot easier to program . I think the best thing is that you can actually see where you have your settings. Its hard to get them back to the ones you want after you have had to turn it off for any reason. I can hardly wait until mine dies. I got it in 2007.

          Comment


          • #6
            Interstim questions

            so, all of you had success with interstim?

            What is it that it has helped you with the most?

            Did anyone have it done and it didn't work and then tried again with a different doctor years later???

            I am wondering?

            They say the new one is a lot better.

            I had a trial in 2006 that didn't work for me. Actually made me feel worse... when it was on.


            I saw a new uro and he suggested that i might want to consider it again... he would do it a bit differently than the first uro and he said the newer one is better than the one i had... i really am confused any help?

            When you speak about the settings ...what do you mean? and also, i am assuming it helps with your frequency of urinaiton? How long was your recovery? And how long did it take to you realized it worked. My trial a years ago didn't work at all... i could feel a terrible pinching pain and it was the lowest setting the representative from medtronics said.

            Anyone it didn't work for ,, i would like to hear form them as well. and what happened when it didn't work. did it hurt or make u feel worse???? thanks ever so much everyone.
            I don't know what i would do without you all.

            Comment


            • #7
              Insterstim

              Hi,
              I had my trial in 2003. It worked well for me. It really helped with the bladder pain and spasms. So a couple of weeks later I had the real one implanted. The doctor that put it in was helping my doctor learn how to put them in. It worked great at first. I had to bad falls and the wire got bent and out of place. This was done in April. In August my doctor was going to put it in. It was not as good as the one the first doctor put in or else they could not get the wire in the right are. It still helped with the bladder pain. In 2009 my battery was dying and they said the model I had was obsolete. So in October my same uro put one again. I had a different medotronic man who really worked with me to get the pulse in the right area. I t has been working fine and haven't had to go back to get it programmed yet. I do have retention. I don't know if that is from the pacemaker interstim or something else.
              Let me know how things go for you.
              LInda

              Comment


              • #8
                wow linda... thanks for answering. so you had some experience with the interstim.
                i felt that my interstim representative was really rushed every time he talked to me... i remember that he had just had a newborn baby and he was sleep deprived and was dstracted,by this newborn baby.. He told me to call him whenever i had a problem, but then always was trying to rush me off the phone... i had a lot of problems with the trial... i had it bilaterally ... so i had two at once done.. (you know they made a lot of money off of me that day)
                But after the trial it seemed like no one wanted to spend the time to anwer my quesitons. and I could never get it to work right.. i always felt this pinching in my vaginal area....
                It was very weird...
                the rep said that it was on the lowest position... so i don't know what was wrong or right... but my experience was not positive.

                so, since it didn't work, i had the trial removed after 10 days. i had a lot of trouble because i had implants on both sides and i couldn't get comfortable and the one side bled really badly.

                So when this new doc mentioned to try the interstim again. i had visions of my experience with it 5 years ago! i thought no thanks. BUT if it is a different model and maybe this doc is better and would do a better job at it.
                My other doc didnt' seem to even care.... after it didn't work...
                I was so disappointed. i wanted to cry.

                Comment


                • #9
                  Woolaleena, you might want to try the trial again. They have sure made improvements since 2006. I think I would consider it if mine hadn't worked and I had changed doctors. To me some doctors can place the leads alot better than others. It sounds to me like your representive was not exactly wanting to help you adjust yours at all. I never saw my representive as my doctor had had his RN trained by Metronics to deal with Interstims after they were placed. He still does my adjustments today. They sould have changed where you felt the stimulation is my guess and maybe your trial would have been successful. I was told that there were 4 different places that they could set where you feel stimulation--rectum and vagina being 2 of them. I can remember the other 2 places. Hope this helps in your decision. And to you might check with your insurance to see if they would pay for a secend trial. Linda

                  Comment


                  • #10
                    Interstim

                    Wolfaleena,
                    Sorry to hear you have had such a bad time. I think the medatronic guy can make all the difference. The first one I had made me feel like yours. Plus he wasn't very people friendly. Our new guy is great. The first one wanted me to go thru the surgery awake. I told him no,not on your life. My doctor said I would be asleep. So you know if you will have a different medatronic guy this time?? Were both leads you had for the IC? I only had and was offered one. I would really give it a try again. Things of changed, my first one was 2003 and then again in 2009 and I could see a big difference. Did they take both of your wires out? I know I had some problems as my lead was so close to a nerve in my leg and I kept getting awful cramps. My medatronic guy was nice and worked until he had it away from the nerve. I have to keep mine on a lower speed because of that. Let me know what you decide to do. I am sure this time will be much better.
                    Linda

                    Comment


                    • #11
                      Sorry it has taken me a few days to respond. I'm still pretty sore and laying around on my left side a lot. When I got the interstim in 2006 it immediately helped with my frequency/urgency. I always had them together and I began sleeping about 4-5 hours at night without having to get up to pee during the trial even. That alone was reason enough for me to get the permanent one. The permanent one responded the same way but also helped me with my bladder pain. I have several types of bladder pain and it didn't help with all but the heavy cramping type pain it helps with. So when it died in May I was really freaked out because I didn't want to change anything. It was working so well! My doc and medtronic rep referred to mine as a "dinosaur" because it was so old and not made anymore. They laughed at my remote!

                      My surgery last week they implanted my new permanent model. It is really cool. They set 4 different settings and each setting has it's own speeds and pulsations set to it. So now I am at setting #3 which is closest to what I had before and I can turn it up or down. If it isn't doing the trick I can go to one of the other 3 setting and try them. Each of those turn up and down as well. Immediately it helped with my frequency again. I am having urgency though independent of the frequency which is new for me. I can't change settings until my post of appt so I'm guessing one of those willl help that. It's not doing much for my bladder pain either but also guessing it's because it is on the low setting. The only bad thing is that my old one was so stuck in there and they had to do so much digging to get it out that when they woke me up to tell them where I was feeling stimulation (to check my leads and see if I needed new ones) I couldn't even concentrate the pain was so bad. They kept trying and would put me out for a few minutes then wake me again a little bit. It still was like being awake while being cut open. They were really apologetic. My old leads were great though and didn't need replaced. I'm so proud! Ha ha Anyway, I'm hoping it will all get better with healing time and once I can change the settings. Once again though I can go 4-5 hours at night without getting up to pee and that alone makes it worth it.

                      The other bad thing is they said this model lasts on average TWO years is all. I about flipped out! Of course that is average and some do last more like 5. It all depends on how high you run it and how much. Mine runs all the time so I expect it won't last as long.

                      About the medtronic rep....mine is awesome. My one before in TX I felt rushed with and like she didn't really even understand what I needed it to do. This lady here in Oklahoma city is wonderful! I love her so much! She is so helpful and understanding and worked to make sure my family understood everything the day of surgery.

                      Hope this helps all of your questions!
                      Last edited by momw/ic; 06-27-2011, 10:08 AM. Reason: Forgot to tell about medtronic rep
                      Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
                      _____________________________

                      DX: IC - November 2002 after hysterectomy
                      Interstim implanted March 2006 - died May 2011
                      Interstim replacement June 2011
                      Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
                      Docs: Pain management doc, urologist, family practice

                      Comment


                      • #12
                        Glad to hear things are going good with your new interstim. Sounds like you went thru alot in surgery. It doesn't surprise that the genators would be hard to get out. My trial surgery was a piece of cake--no pain pills needed right after surgery. But my permanent one was a different story altogether. Hope all continues to well for you and that your insterstim helps just as your other one did when you get it set right.

                        Comment


                        • #13
                          Interstim Surgery

                          Hi,
                          I am glad you are doing and feeling better. The new remote sounds neat. Mine only has and up and down and off/on. So my remote is old compared to yours. I know when they took my battery pack out it was planted deep in the butt cheek. They replaced it with a small on and at times I feel like it is moving around but no pain with that. I noticed on my last surgery it took a while for my bladder to settle down. Hope your bladder does better in a little while. I can't believe they woke you up doing the surgery, that would be awful. Why do you have two wires? All three times I have had my surgeries I have only had one wire.
                          Take care,
                          LInda

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