InterStim Therapy

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I am going on a year of regular CIC therapy to treat my urinary retention. Currently I self-catheterize 6 times every day and have adapted well with no problems. As others here have said, it is as easy as flossing and usually takes less time. I am hoping to rehab my bladder and eventually eliminate the need for CIC and avoid more intrusive procedures with low chances for success.

If I recall correctly, Jim James stated that he "turned a corner" after a year of CIC and gradually weaned himself from the need for CIC by increasing his ability to urinate naturally without a catheter.

However, after almost a year of CIC, I am still unable to urinate at all without a catheter. At a recent follow-up appointment with my uro, I asked when I might "turn a corner" and be able to urinate naturally, and he said that may never happen. Bummer. He further stated that because my bladder was stretched so far for so long (over 5 litres drained during an ER visit after a fall from my bike), I have nerve damage that may eliminate the ability to ever void naturally again. Bummer.

He did suggest an alternative procedure called InterStim Therapy that would require a device to be implanted that would stimulate my bladder with electronic pulses, much like a pacemaker. He said he would actually do two procedures including implanting the device and another to clear any obstruction in my prostate.

I told him I am fine with continuing CIC for another year in hopes of further improvement and avoiding any procedure, and he agreed to allow me to do this.

However, I am curious if anyone here has had this therapy and/or know of any experience with this. It supposedly has an 83% success rate which is much netter than the 20-30% success rates my uro advised that I would have with any other procedure.

I appreciate all responses.

Patrick

https://www.meddeviceonline.com/doc/sacral-nerve-stimulation-enables-patients-wit-0001

0 likes, 6 replies

6 Replies

  • Posted

    Were you able to pee before starting CIC? As far as using CIC to get off CIC, I think you might as well forget it. Other than Jimjames, no one else was able to repeat it in the 4 years I am on this forum. The main reason is CIC can not remove obstructions, which most of us have. Hank

    • Posted

      Yes, I was voiding regularly until my ER visit after my bike fall where 5300 mls were drained from my "massively distended" bladder. Apparently the pressure from my overfilled bladder was allowing me to void naturally and regularly. The ER staff could not believe I was not in excruciating pain as they had never seen so much urine drained from my bladder.

      But since it was drained, I have never been able to void naturally and wore a Foley for several weeks before starting CIC. It may be wishful thinking, but I will give it another year in hopes of success like JimJames had, who said he "turned a corner" after a year of CIC. If I remember correctly, it took him close to two years before he was able to wean himself away from CIC with natural voids. I'm hoping he will chime in here.

      Patrick

  • Edited

    Hi, Patrick,

    You may not remember me, but I'm the guy who's urine retention was 7,000 ml. I was also told that I would never void on my own... ever... by 4 out of 5 urologists. One of the urologists suggested Interstim therapy for me. I declined because it didn't make sense unless I had some neurological problem, which I didn't. I was not able to void on my own until I had a PAE done. It's success was limited due to my large median lobe, but I could void some. I still had to CIC 4 to 6 times a day. And over time my natural void volumes decreased. Last April I went with FLA, and so far it's been successful. I've been off catheters for the past 2 1/2 months.

    Stebrunner

    • Posted

      Hi Stebrunner,

      Yes, I remember reading your posts on JimJames original post. Happy to hear you have had some success recently, congrats! I'm sure you're happy to lose the catheters, eh?

      Not sure what you mean by "neurological problem"...but apparently I have nerve damage from my bladder being stretched so far for so long which caused me to fail my urodynamic testing miserably. The nurse who conducted the testing also mentioned nerve damage and recommended CIC.

      Although we didn't discuss InterStim in detail during our recent visit, I assume my uro is thinking the InterStim will stimulate my bladder to void naturally, in addition to a procedure to clear any obstruction. If you read the article in the link I posted, it claims an 83% success rate in the study, including eliminating the need for CIC.

      I will continue to research this option until my next visit with the uro a year from now. Hoping to get more responses from those who have experience with InterStim.

      I appreciate your response and wish you continued improvement!

      Patrick

  • Edited

    Patrick,

    Can you have a surgery to clear the prostate obstruction first, and see if your situation improves on it's own. If it doesn't improve on it's own you could have the Interstim device planted later.

    It is not clear from reading the article if the device improves urinary incontinence or urinary retention. It is also not clear if the nerves are stimulated continuously or only when you want to urinate. Does the device provide an odd sensation ?

    Thomas

    • Posted

      Thomas,

      All good questions that I will ask my uro at my next appointment. Since it's a year away, maybe someone here can enlighten us further.

      FWIW, after I failed the urodynamics test, my uro said "no use expanding the pipe until the pump is fixed", indicating my primary problem is a bladder that is too weak to squeeze urine out, its muscles weakened by being stretched too far for so long. Since I had planned on continuing CIC for another year in hopes of rehabbing my bladder, I did not press him for more information on the Interstim therapy and "clearing the obstruction as I'm hoping to avoid an intrusive surgery.

      I appreciate your feedback!

      Patrick

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