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Interstim for mild IC?

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  • Interstim for mild IC?

    Just got a new urologist about an hour away from my house, and she's recommended an interstim. My primary symptom is urgency, however my IC is fairly well controlled at this point...I only have to pee once at night now, and I mostly only flare around my period. It was a completely different story a year ago but I'm doing much better now. From what I'm reading from other patients it doesn't sound like the best fit...thoughts?
    Diagnosed with IC in 2005, PFD in 2016. My sister has had IC for 21 years and our mother over 30. 66 years of bladder fun combined!

  • #2
    Re: Interstim for mild IC?

    No... No... Noooooo!!!!! Interstim has a very high complication rate which you can research using the MAUDE database on the FDA.gov website. Hundreds and hundreds of very severe adverse events, MRSA infections, device failures, shocking sensations, heart rhythm changes and, yes, about 20 fatalities the last time I looked. It's really shocking, pun intended. Then you have to ponder multiple surgeries, the cost of the procedures, etc. etc. We had one nurse who had it done... and beforehand she confirmed with the doctor, the hospital and her health insurance company that it was covered... and they all said "yes." She didn't, though, get it in writing. Ten days later, she had a $50,000 plus bill from the hospital and they threatened to garnish her wages. The stories are very sad at times.

    So, rather than going for the surgical neuromodulation, how about the non-surgical one... Urgent PC. This is done at the ankle with an acupuncture needle, requires no surgeries, has very very few complications (two the last time I checked for tingling) and is far more affordable.

    Please read the neuromodulation section of our website!!!

    https://www.ic-network.com/interstit...uromodulation/

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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    • #3
      Re: Interstim for mild IC?

      Thanks for the quick (and very informed!) response! A friend with IC has had marvelous success with it, but hers is much more severe and a different subtype, I think. Glad you mentioned the insurance angle, too. How awful. This urologist really seemed to prefer the interstim over the Urgent PC and said something like as soon as you stop doing the UrgentPC "it just goes back to the way it was," ...basically characterizing it as a waste of time, which I thought was curious. I was really only interested in interstim if it were reversible and low-risk, and it certainly doesn't sound like that's the case. Going to take this option off the table.

      Thank you so much for your input, much appreciated!
      Diagnosed with IC in 2005, PFD in 2016. My sister has had IC for 21 years and our mother over 30. 66 years of bladder fun combined!

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