Slomo said:
DO NOT RELY ON INTERSTIM.
I'm trying not to, but it seems that, no matter how much volume I have in there, it doesn't want to squeeze. I thought before yesterday that with the bladder being full, it'd have pressure with which to use to produce a good stream, but no. It released ok, but just dribbled and dribbled and dribbled for three freekin minutes to pass over 500ml.
I've had the interstim test implant, and it absolutely fried my sacral nerve- making things much worse for me. Also look at their own inflated "success" numbers. They say half will see an 80% improvement. Well 50% of 80% is actually an overall 40% success rate. Not good. Not tocmention the whole point of interstim is to override and calm nerves, not make them work more.
Did you have it turned up too much? The literature I was sent yesterday suggested two stages of the Interstim.
Stage 1: they insert the electrodes, and install an external control device/programmer. You're taught how to use it, turn it on/off, and adjust the amplitude.
Stage 2: After 8 weeks or so, and it being successful, they implant the battery into the small of your back, and you use a remote programmer device to control the Interstim.
Also, it's possible your bladder has given up on contracting an became weak because of your obstruction. Get thst fixed first, then start worrying about your bladder.
Yes, this is what we're going to do.
And my obstruction was 100% blocked. I simply could not even pee at all. Had to have a suprapubic put in through my abdomen for a couple of months. I'm really surprised your urologist didn't try to dilate you back open with sounding rods. It's temporary, but does work to open up a stricture for 2-3 months. Long enough to get you set up for a surgery or something.
My Urologist did dilate my urethra back in November. Got it up to 22FR. She thought that putting me under now (was proposing tomorrow, actually) to do a cystoscopy + dilate + work out the bends in my weird urethra for catheter insertion next time I'm needing a Urodynamic test done, might actually be a waste considering the reconstructive urology surgeon she's referred me to will initially do exactly the same thing.
I hope your cysto is really soon, and I would highlt recommend you ask to see if they plan to dilate you after it. Be warned though, getting dilated is a briefly painful procedure.
She was suggesting that if she did it, she could refer me to her continence nurse to show me how I can continue to do daily dilations. I told her that, based on my reactions in the failed UroD study a few minutes prior, the chances of my successfully sticking something up there myself is zip.
Thus our discussion turned to the BMR.
I sent my Urologist an email today stating that I'm booked in for a consult with the reconstructive surgeon in 2.5 months, and if that was too long a time. Her response was it's ok so long as I continue to pass urine ok. If not, to get in touch ASAP. We'll see what happens in the meantime, eh!