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My Story

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  • My Story

    I decided to dig out this old post that was a response to a question on Interstim back in Augustso that it is more accessible and easier to find for those of you who are interestednow or in the future.

    I thought long and hard before deciding to actually post my success story on these boards because so
    many people have had bad experiences.I don't want someone to hear my story and blithely go forward
    with the interstim procedure and be harmed. There are always risks with new procedures and devices and
    anyone considering this must really understand that and go in with eyes wide open. But beyond that
    clearly there are good surgeons and bad surgeons, honest ones and dishonest ones,etc. They do things
    differently. Some follow the protocols and some don't.
    I have no control over that. I can only tell my story. But honestly at this point the only people I feel
    comfortable encouraging are people who go to my doctor. Not because he is the only good doctor but
    because he is the only good interstim doctor I know ( not that I personally know any bad ones).

    One thing I feel very strongly about is the proper way to have the test stimulation. NEVER EVER go with a
    staged trial unless there is a super dan reason to do so (and even then, get a second opinion first). Yes,
    with the older version of the test stim the wire can move, but many of us have had successful trials the
    old fashioned way. In adddition if the posts on the Challenge Boards are any indication implanted leads
    sure seem to move too.

    Also, if you look carefully at all the posts over time you will discover that removing an implanted wire is
    alot harder and potentially damaging and painful than removing the test stim wire that is not sewed in.
    Why would you want to do that when there is a simpler and safer alternative? I have had my implant for
    over 3 years now. recently I asked my doc if he now does the staged implant. He does not for the above
    reasonas and many others. But this doc has always followed the protocols and put his patients welfare
    first and foremost.

    Finally the Interstim IS NOT FOR PAIN, no matter what anyone else tells you.

    I apologize for this lengthy intro but it is the only way I feel comfortable posting my success
    here goes.

    Whereas with hindsite I probably always peed more often than most I never thought much about it until it
    really got out of hand. I was peeing as often as every half hour by day and 4-6 times at night. I always
    felt like I had to pee, even when I had just gotten off of the toilet. I had some mild pain and discomfort
    but mostly I was exhausted. I already had rheumatological problems and the lack of sleep just made me
    sicker. I couldn't work anymore,etc.

    None of the usual IC treatments work, nor did biofeedback and electrical stimulation(which by the way is
    also supposed to be tried and fail before considering the interstim.

    Then my doctor offered me the chance to have a test stimulation. He was just learning the interstim
    procedure and in fact I was one of his very first interstim patients. I thought long and hard about being a
    guinea pig for the technology and the doctor. But I checked the doctor out and other doctors and
    surgeons attested to his surgical skills. He was not a new doctor, just new to the procedure.He was being
    trained by an IC expert, Dr. Whitmore. In fact she was present at my test stim. I can't explain why I felt
    comfortable going ahead but I did.

    The day of the test stim came. I drove to the office myself( I was told I could) and was fully able to drive
    myself back home after. yes, there were a few moments of brief intense pain as the needle was being
    placed near the nerve repeatedly until the correct spot/responses were found. But that was it. My back
    was a little sore or stiff but at no time did I require any medicine.

    During the trial I avoided bending from the waist or getting it wet. I had 1 test wire on each side and I
    tried one for a few days and then turned that one off and turned the other one on. One side definitely
    worked better than the other. It cut my frequency in half and let me sleep 5 hrs straight at night. The
    other wire stim did not feel like it was in the right place and didn't do much. Oh, the wire that worked did
    slip a little after 2 days but I had clear objective proof (voiding logs) that it worked before it started to

    I went back to the doctor and all he did was tug on the wire and pull it out. Real quick and did not hurt at
    all. No surgery. No incisions.

    then the hard part came. I had seen and experienced relief and had to wait months for insurance to
    approve what at that time had just come off the experimental list. I think it is much easier to get the
    approvals now.

    Finally, April 26,1999 I had the interstim implanted. As surgeries go (and I have had many) I found it pretty
    easy. I only took pain meds (toradol) for 2 days, and honestly if I hadn't had my period and menstrual
    cramps I don't think I would have needed the meds on the second day. Don't get me wrong, my back was
    sore and I was tired from the surgery, ansthesia etc but it was much better than I expected. For me the
    worst part was how sick to my stomach I got from the anesthesia. Between that and the IV fluids and my
    constant need to pee (my interstim was not on yet) I had a horrible first night with little sleep-but little
    pain. The next A.M. I was still sick to my stomach so I stayed a second night. My doc decided to turn on
    the interstim very very low since it was so soon in hopes that it would work a little and let me sleep. It
    did. Not a dramatic improvement but enough to get a few hours at a time. I went home the next morning.

    I had numerous adjustments over the next 4 months. My doctor was pretty available so I could see him
    every couple of weeks when I needed to. basically we experimented with each electrode individually and in
    various combinations, with me keeping voiding logs for an objective record. Ultimately we found that I did
    best with a specific 3 of the 4 electrodes on and cycling 8 sec on and 3 sec off. The 4th electrode made
    my urgency worse so it is always off. By the end of the month I was going at least 6 hours a night and at
    least 2 hours apart during the day. Very gradually and without any adjustments I found that I often could
    sleep all the way through the night. Or I would realize I had been at work all morning (I can work again)
    and not gone to the bathroom. In gneral I still notice slight improvements. I am still not normal. Most days
    I still pee every 2 hours more often than going 3 or 4 but hey, its enough to have a life.

    I still have IC and I still have flares. When I flare I do wake up once at night-once-and that's a bad day
    and may pee more frequently than every 2 hours, but not for long.

    After the first 4 months we stopped reprogramming,feeling we had gotten it as good as it was going to
    get.At that time Teri and Debbie B actually had better, amazing ,results than me. But I trusted my doc
    when he said I think we should stop now and lets see how it runs for the long haul. Once I had a bad flare
    and really wanted it reprogrammed and he said it would be a mistake to change it from what works. The
    flare would pass. A t the time I was frustrated, but he was right.

    I should also say that evenonce we stopped reprogramming I had a fair amount of IC discomfort. For the
    first year I still did bladder instillations about every 4 months, but I haven't needed any in the last 2 years.
    I went to see Dr. Moldwin who said I had PFD. I had myofascial release therapy and warm baths twice a
    day. My pain and discomfort went away. My PFD has never come back. Maybe it is because we broke the
    cycle that had built up pre-interstim, maybe(this is my own theory) it is because the interstim stimulation
    for me feels like very very gentle kegels-tightening & releasing-which of course is a type of therapy in and
    of itself, but one my pelvic floor muscles couldn't do on its own and certainly not 24/7. Maybe I just got
    lucky and my luck will change tomorrow.

    I still take elmiron (afraid to stop it incase I need it since it takes so long to quit working. Recently I did
    decide to try stopping my urised-since that works quickly. I seem to be okay without it. A year and a half
    ago I tried stopping it and my bladder discomfort came back. I guess things change. Is the interstim
    causing further improvement or is it coincidence, who knows?

    The interstim is not perfect, even for me. Lately the area where my battery is implanted hurts more. I
    think it is because I changed my exercise routine to accomodate other medical problems unrelated to all of
    this. The exercises I do now (in water) work the upper buttocks more than walking 2 miles a day (which I
    can no longer do for other reasons). It may strain or put pressure on the muscles around the battery,
    muscles that may be compromised by the implant. Maybe I will learn to live with it, maybe I will have to
    modify or reduce my exercise, maybe it will have to be moved.aybe the whole darn thing will break

    In the meantime, I am grateful for the 3 years of life that I have had. And I love it that when we go on a
    trip my hubby needs a pit stop before me!!!

  • #2
    Thanks for your story very positive. I am considering the procedure well I should say my uro told me i was at the end I just got done with bcg treatments and I don't think they worked, at first I was getting better but latley it has been getting worse every day. The holidays are over everyone has gone home I have been gridding my teeth since before Christmas so I am going to wait for a few weeks before I go in and see the uro. i already know what he is going to say. So thanks again for your story maybe there is still hope for my bladder. I feel that if I can get 40% relief and a ggod nites sleep i can live with myself and others with me


    • #3
      Reliving that story put a smile on my face Ruth....took me back to those days that I thought I'd forgotten about [img]wink.gif[/img]

      I could never ever ever express to others about the trial. I had the 'old' trial, like Ruth's the first time. Last Oct I had to have a revision and I had the new staged trial which was totally barbaric and I would never consent to such a trial again in my life regarding ANY part of my body. If you can't to find a uro who does the original trial, keep me, it's well worth your wait. If it takes a few more months, so be it.

      YES!!!!!!! The implant can give you a whole new life. So, take that extra time, find someone who will do the original trial and GO FOR IT [img]biggrin.gif[/img] [img]biggrin.gif[/img]

      wishing you the very 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".


      • #4
        My uro does not do the staged trial either. my experience with the test was very similar to yours. I had my implant on 9/23 and it was turned on on 10/07. My implant works wonderfully and is doing it job. you must go into this procedure with your eyes wide open and make sure that you have a very compentent surgeon. thanks for posting your story.


        • #5
          Ruth, that brings back so much emotion. Sounds alot like my story! For those intersted, You can read my story at


          • #6
            Thanks Ruth for your story on your interstim and I am so glad that is working for you. I wish my interstim was working for me like yours!!! I am waiting to have my interstim taken out next month and will be glad to have it out. I am glad I did have it put in and I wish it had worked for me. I am really upset with my doctor that put the interstim in. When I started to have problems with the stim he did not want to deal with me. I am in process to try the Botox treatment and hope it will help me.

            Cbsummer do you have unrgency&frequency? Do you know that is not recommend for pain??? I would go have it done if you are doing for ugency&frequecy. Hope you feel better!! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />


            • #7
              I have it all. Frequency and pain i feel if can can controll one or the other I would be happy. I am just leary of the whole process. I have tried everything and keep getting disappointed when the treatment doesn't work. If it doesn't work and causes me more problems I am not sure that i can handle it with a good outlook. Last year my uro wanted to just remove my bladder so i could get on with my life but i just am not ready to give up yet. My doctor understands and is willing to support any thing I want to try. thanks


              • #8
                Ruth, thank you for your positive story. I had my
                interstim placed on Sept.9 & turned on Oct.9. I
                have had some challenges til the programming was right; & I take Detrol LA. They seem to work to-
                gether. I too had the original test-stim & had a
                great surgeon. I am so happy with my results now;
                it's soooooooooooo nice to get up on;y once per night instead of 7-8 times! And I love the freedom of not needing to know where a bathroom is RIGHT NOW! For those who are thinking of this procedure, be sure to think it over & ask your doc
                LOTS of questions!
                Kathy <img src="graemlins/hi.gif" border="0" alt="[hi]" />


                • #9
                  You are all so helpful with your stories! Can you tell me exactly what is the staged test and what is the origial test? I want to make sure I have the original and I need to know what I am asking for. Also, can someone tell me what the trial period is like so I know what to expect. And if the interstim changed anything about your daily activities. I swim and do the treadmill, and I am a really hyper person, constantly moving around. Will it stop all that? Thanks so much! <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />