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I am having my interstim removed and have questions

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  • #16
    Re: I am having my interstim removed and have questions

    My interstim for neurogenic bladder was placed in 2006. Replaced in 2010 for a new unit due to broken lead.
    It helped my neurogenic bladder (happened after hysterectomy) but noticed over time I needed less and less simulation from it for good results. I also noticed over time (a period of 8 years) that the pain in my lower left back/butt area
    kept increasing in a very particular spot /// my (bad) nurse practitioner at my urologists office insisted my back pain was not due to the interstim. After she was "let go", the new nurse practitioner insisted that the area of my pain is directly in the place where at insertion site (of the interstim!). This after YEARS of steroid shots and pain medications for what I was told was sacroilitius! I had a urodynamic study done 8 years after the original implantation. My bladder tested normal - NOT neurogenic. Could that HAPPEN? Yes. It's rare, and not the norm but in certain cases nerves can regenerate and the bladder can regain lost function. I was one of the lucky ones. I had the interstim and all it's component completely removed 2 weeks ago. My bladder has returned to it's NORMAL functioning and my BACK PAIN of 5 years is GONE. Now, it's 2014 - I just had to tell my story. You won't read many like it and I in no way mean to give anyone false hope. I had IC symptoms/but not hunners ulcers when the interstim was placed and had to stick to the IC diet protocol to avoid an increase in IC-like symptoms / due to nerve damage from years of uti's. However was told I did not have IC. Very confusing. --- Well that's my story and it's nice to slap my butt now without feeling like a cyborg and I consider myself to be a "saved soul" now on my second life / with the message of never give up. The body is always healing. It's what the body does... so don't be afraid to ask "what if" once in a while... the answer might be better than you think.
    Of course, never never turn off your interstim without your doctors approval. However when I finally did get the "go" to turn mine off - I got my life back and if you go back some years and read my old posts.... you'll see that I didn't have much of a life at all back then (all about my pain/food/fear and isolation). Life can get better. The body can heal and I believe mine did because I believed just that (and I was very lucky!)