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Results from left side trial w/right side Interstim

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  • Results from left side trial w/right side Interstim

    I have been blessed. The S3 left side trial was removed yesterday, and I gave my uro the diaries. I was so worried that they would not show a significant enough improvement so the insurance would cover a second implant for pain.

    During the trial period, I took all meds except Vicodin for pain, Marcaine instilled in the bladder each night, and, of course my TENS. The pain was not gone, but down to a 4 or 5 from a 6 to 7.

    But the most significant finding and the most difficult thing to prove was that, even without the above meds, etc., I was able to sit on my fanny like a normal human being! Fortunately, I have a backround in math, so my husband encouraged me to show this on a graph. It was very effective showing that before the trial I had to spend most of the day reclining or the pain would escalate. There was very little sitting without tremendous pain.

    My results showed that during the trial I was able to spend much more time sitting than reclining. I also had a separate graph that showed the highest and lowest pain level each day and how long each lasted. This showed that there were many more hours of 4 to 5 pain. One day, there were 8 hours of level 3 pain!! [img]smile.gif[/img] [img]biggrin.gif[/img] [img]smile.gif[/img]

    The uro was very pleased, as am I. Please keep my uro in your thoughts and prayers while he wrangles with the insurance company to get funding for a 2nd implant in my left side. If he can't, we'll have to go to a neurosurgeon to implant a different device. That would be OK, but that involves putting something very near my spine....and probably another trial. Hopefully, my uro will win so I don't have to go to another doctor, and probably have a 4th trial with a different device. [img]frown.gif[/img]

    The moral of my story is....keep a detailed diary. Even though I couldn't think straight enough to figure out how to show improvement [img]confused.gif[/img] [img]confused.gif[/img] , my hubby could!! Since I.write down every time I stand, sit, recline, climb stairs and the pain level each time...the information was there. Oh, how blessed I am to have an understanding and supportive husband and uro.

    I really hesitated before writing this, 'cause I KNOW that the Interstim is not approved for pain. It does for many, and did for me, improve the frequency and urgency...which does allow many an improved lifestyle.

    But, sometimes, as with my downward pressure, bearing down pelvic pain, the Interstim does work as an added bonus. How very fortunate for those it does help, and how very sad for those it doesn't. My heart is with you.
    Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

    SusanC

  • #2
    I am so happy for you

    Susan-I am so happy that it helped you . I did try the temp and canceled the implant. I canceled the implant for fear of the pain of the implant and from the procedure itself. I hope you're not in too much pain . I guess we are one of the lucky one's that the interstim does help :woohoo: . My new uro mentioned the implant again to me since I am in agony all the time . My thoughts and prayers are with you . Good luck on your implant and with the insurance company. Let me know how you are doing.
    Hugs, Nina

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    • #3
      Susan,
      I am so glad this is helping you. You wrote a very informative post about your situation. I don't think anyone can be mislead. You very clearly stated that Interstim is not for pain but for frequency and urgency.

      This is something everyone decides for themselves and having all the information is good.

      Again, I am thrilled this is helping you.
      Jolene

      "Life is what happens when you are making other plans" John Lennon

      IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

      Information for Patients can be found here.
      http://www.ic-network.com/patientlinks.html


      Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




      Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

      "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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      • #4
        {{{{{Susan}}}}}
        I am so glad that you got the added bonus as far as pain control went, even gladder that you pointed it out I don't know what kind of insurance you have but Blue Cross didn't even question my surgeries. All the claims were submitted by the dr. I never saw any bills other than going in for adjustments (original uro).....the 2nd uro knew how to bill the procedure properly and I didn't have to pay for any of those.......you should try finding that out from you insurance company or the biller at your uro's office.

        Keep up the GREAT work
        teri
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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        • #5
          Update: August 2004

          Imagine my surprise to see replies to my old post! Results of the trial were posted here to show frustration for the hoops docs and patients have to hop thru' . As it turned out, the charts and graphs convinced BC/BS Senior to cover the procedure. (My uro couldn't believe how quick the approval was...just goes to show that good data can help!) Had it done in May 2001.

          But there WAS trouble with the implant.....I got shooting pains for no apparent reason and the implant kept shifting and turning just under the skin. Had to wear little foam pads in order to sit or lay down. Couldn't sleep on that side 'cause the dang thing would shift. When I couldn't stand it anymore and was getting lots more shooting pains many times a day, my doc decided to fix it.

          So, long story longer, in May 2004, I went back in for a new surgery. My doc put the implant under some muscle this time. Much more trouble post-surgery with pain and healing, but as of now, 3 months post-op-post-op, the muscle pain is mostly gone, and the implant is working much better....no more twisting of this "thang" inside me and no need for extra "foamie" mini-cushions whenever sitting, reclining, etc.

          There can be problems with interstim....I've been lucky...Please, please consider it if you think Interstim is right for you....It's not FDA approved for pain, but does help a very few patients....In my case, it has helped enough for my pain to finally be helped by the meds I have always taken, which barely took the edge off before, but now ramps the pain down 2 notches - enough so I can do one thing every other day....i.e. grocery shop, malling, going to a picnic ; when I get home from the 2 hours doing something, we pay.....heating pad, more meds, and a 1/2 day in bed...but it's better than it was....at least I can sit a little more, etc.

          If anyone out there has any questions about the stim , please ask on this board...I am there for you and, like others will share any and all of my experiences . We can commiserate and others will help, too.

          Best to alll....write soon.
          Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

          SusanC

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          • #6
            :woohoo: glad to here it.. being an interstimer myself its great to hear someone else has had some relief... some of these doctors say it is for pain, they should have it tattooed on there head that its not for pain...
            hugs
            Cindy
            'The will of God will never take you where the Grace of God will not protect you.'

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