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Interstim and side effects.....

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  • Interstim and side effects.....

    HI, I was wondering if you guys can tell me what activities and exercises you had to either stop or be careful with after the Interstim implant? My DR has asked me to consider the implant b/c nothing else seems to be working. I am going in to have ANOTHER hydro next week Thursday (this makes 14 in the last 6 years). I take Elmiron, Elavil, Zoloft and Levsin and they help a lot, but not with pain and bladder fullness. How long did it take you to recover from the surgery? Were you able to go to work/school while in the trial stage? What were the most severe side effects you experienced? I also have irritable bowel syndrome and many drug allergies. I want to get the most info I can before making this decision. I appreciate you taking the time to answer my questions! Thanks!
    Alison Brown
    Chicago Support Group Leader

  • #2
    If you have the surgery, I wish you the very best. My dr didn't put any limitations on me as far as activities or exercise go, but I have other limitations because of other conditions so I'm very careful of anything that involves my tailbone area others could probably help you our more there.

    PLEASE, if you are having the interstim done for pain purposes do your homework. PLEASE. There is no way that a dr can tell you going into the surgery that it will help with pain. It's a total crap shoot. And, if your dr is telling you otherwise, he is mis-informing you. You can call medtronics and ask questions regarding this. They have an 800# but I don't have it with me right now.

    Too many drs are telling IC patients that this surgery will help with their pain...this device is not even FDA approved for the treatment of IC so how can a dr make that claim??????? There are no results, no studies, no nothing, to be looked at to beable to make this claim.

    Look thru past posts regarding this issue. There have been some pretty heated discussions regarding it but there has been a TON on information shared.

    wishing you the very best
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      Hi Alison:

      When I had the InterStim trial done, I did my normal things but at a slower pace, you are told not to lift or bend over, so I limited myself to those things..
      You have the trial in for about four to five days..

      I had my InterStim Implant since April 20,99..
      I was in the hospital for two days and out within the third week doing things..
      I am able to do things again, but I am also aware that I have a lead wire in my spinal core too, so I am careful not to fall in that area..
      As of May 8th, I had to have the surgery done over again as my Implant was not working and they found that the lead wire had crack in the centre , so I had to have a new lead wire placed back in..
      I was back to work in two weeks.
      Also talk about being careful I was very careful and I hear others with the Implant doing many different things, so I really think in my case it was faultily lead wire for sure!!
      The most important thing is read all you can on the InterStim Implant and have a well experiencs doctor in this procedures and if you able to meet any of his patients that had it done by him would be a great benefit to you for sure..

      Good luck and do what is best for you Alison, only you can decide on doing what is best for you!!

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


      • #4
        Well this is good.!!!!As for another bunch of argumentive postings, all I can say is what something does for one necessarily does not do for another.
        I for one have never met a medtronic rep. I have IC and PFD and when I had the trial done the bloat and pain went away. I quess I was one of the lucky ones. I can't really remember the pain as it was but I will say the implant did help me in that respect and also for urg/frq. The only problem I have now is that sometimes I cannot get a full relieved feeling when I pee. It may call for a second wire as my DR and I discussed but I do have days where I do feel like I never had the problem. All I can say if you feel you have exhausted every other measure as far as drugs etc.(none of which did anything for me except elmiron for burning, and I have not taken it now for a year and a half) and opium bellas donna for spasms. None of the other anti spasmodics worked for me. I am also in menopause(one of lifes little wonders, lol) and that also has a great effect on the bladder from the info that I have read.
        So in the long and short. The Interstim has helped me alot with pain and the only time I seem to flare is a week before the period I don't get now, but have all the hormones still running around throwing me off,
        Hope this answers some of your questions. I also still find that where the wire is sometimes it feels like it burns and aches but that is disappearing with time. I swim go camping(trailer, no more tent) and have to be careful not to frog kick. Some nights when I am in a flare I have more frq/urg and do not get alot of sleep, and still have not "healed" enough especially on the sleep part as I have to get up and pee about 3 times a night and have to cath sometimes to.
        So unitl this improves and the sitting becomes more tolerable I will not be returning to work. I can only sit for about three hours and then I start to ache.


        • #5
          Hi Allison, I do hve Inerstim and there are some activities I had to modify due to the implant. But for the most part I can do whatever I want. And of course using common sense works pretty well too. I still workout and do normal activities.

          I prolly would stay away form rollerblading as falling on my right-backside would be a concern.

          Gathering info and research is an excellent idea. I researched InterStim for Urgency/frequency for almost 2 yrs prior my implantation (done 3/5/01). I believe there are differnt nerve stimlators right now. One is the Interstim (for urgency frequency and incontnence) I have this implant. I beleive there is a differnet one currently being tested for pain, but I'm not sure.

          I got an info packet from Medtronic RE: InterStim, just visit

          I have to admit the patient's stories really elevated my hope. So to answer your question: No I really didn't have to limit or change my activites at all. My healing time: I gave me self until Middle of April (surgery was March 5) and then I slowly went back to the gym--just doing the treadmill. ANd I STOPPED if I felt at all fatigued or achy. Listen to your body, and you'll do just fine. I hope you reach a decision you are comfortable with. If you want to email me for more info with my experiences (as if this isn't long enough right? :p ) Email me at mailto:[email protected][email protected]</A>
          Take Care,
          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


          • #6
            Dear Alison,
            I've had my Interstim since june 14 and so
            far so good. My uro never promised me that it
            would control my pain. I have been able to
            work with my implant with only minimal
            restrictions. I'm a nurse so I don't do alot
            of really heavy lifting, bending or sever
            twisting motions. If you use good body
            mechanics and don't overwork your spine, you
            will do just fine. As for the pain, the stim
            controls my bladder spasms and also the
            urgency and frequency very well so I have
            alot less discomfort than before. Yes, I still have flare-ups but they seem to be alot less severe than before, also. For those
            that want to pursue Chinese herbal remedies
            and non-traditional methods of treatment, I
            would only caution you to please be aware of
            any side-effects or potential interactions
            with other meds. I still consider myself to
            be a chronic pain patient but things are so
            much better for me now. I believe the Inter-
            stim is a good treatment option and holds out
            alot of hope for those of us that are not
            having alot of success with other methods.
            Hope this will help you and hang in there,the
            Interstim can be a positive thing. MargaretB.
            margaret b.


            • #7
              :::taken from the ICN Deletion Policies:::


              Operating a web site and message boards isn't as easy as it appears. We have thousands of participants, with a wide variety of needs, experiences and opinions. We have IC patients who are well adjusted and able to offer support to others. We also have patients who are desperate for information and support. We see patients who have overwhelming personal issues unrelated to their IC, such as divorce or family issues. And, we see IC patients who are in need of both physical and emotional care, due to severe depression, anger or anxiety.

              Conflict between people inevitably happens in any internet message board and newsgroup. It is not, however, the norm. In general, nearly all postings are positive, helpful and supportive. However, there are a few individuals out of the thousands that we see each month, who consistently create conflict. Their behavior requires firm guidelines.

              It is also important to understand the dynamics of a health related discussion board. Patients in pain are more vulnerable. Sometimes they forget our golden rule of "debate the message, not the morality or integrity of the author." It is inevitable that there will be times when pain and frustration can result in unintentional or inappropriate postings (we all do this), or a message may be misinterpreted by others. When conflict happens, our goal is to step in and remove offending posts, if needed."

              ~I have removed some posts and closed this thread to discourage further argument. If you would like to discuss this decision further, please feel free to contact ICN Manager Jill at [email protected]

              "The first time her laughter unfurled it's wings into the wind....
              We knew that the world would never be the same."
              ~Brian Andres

              Baby Kaitlyn was born on 07/08/01 after a successful pregnancy with IC!