Sacral Nerve Stimulation/Interstim device anyone?

[SirRaymondClench]

I had an op in July and the surgeon cut some nerves which mean my bladder no longer responds and I have had to have catheters since.
My Urologist told me after a raft of tests that my bladder is now fucked and pretty much the only thing for me is now Sacral Nerve Stimulation - a pacemaker for my bladder.
I know some people have them for urinary incontinence (mine is retention) but I don't know anyone who has one (I don't think)
Has anyone got any experience of one?
I am due to have a 2 week trial and that will be implanted under spinal block.

[SirRaymondClench]

Anyone?

[Matildathecat]

Hi,

Sorry this has happened to you. It sounds very depressing.

I also have nerve damage following bodgedsurgery. (Though yours may well not have been).

Mine is at L4/5 and gives me severe pain, sciatica and leg weakness. I also, though have loss of sensation in my pelvis and bladder. I only really feel the urge to wee when my bladder is bursting.

I'm under a pain clinic and have been offered the option of a spinal cord stimulator, is that the same? Anyway it's for pain rather than bladder issues. Tbh I'm very, very wary as I've unsurprisingly become fairly phobic about any spinal surgery. I've also heard they don't work especially well (for pain).

So sorry, not much use to you but I will be really interested how it goes. If you feel able please do update on your progress.

Good luck.

[walterwhiteswife]

ive just been told that I have to have this for my bladder

[Ilovefluffysheep]

I had the trial one to try and stop my frequency issues. Unfortunately it didn't work so it was removed after 4 weeks. Mine was done under general both times.

Nothing to be alarmed about, just remember to switch it off before you remove the thing for a shower, because if you don't and it gets turned up and you plug it back in, it gives a bit of a shock!

I have no idea how it works if your nerves have been cut, as I thought the point of it was to kind of switch your nerves off?

I will be having my nerves cut - 2 weeks today I go in for a clam cystoplasty which is major bladder surgery where they cut it in half, sew a piece of bowel in as a new lining and to make it a bit bigger, then sew it up. After recovering from that, I may have to self catherterise for life. Going to the toilet a lot may not be life threatening, but it can be life limiting, which is why I have finally chosen to go ahead with such a big op. Am petrified though!

Good luck with yours, honestly, it will be fine. Not painful at all, is hard to explain, but is like a weird buzzing in one of your buttocks!

[walterwhiteswife]

hey ilovexx did u have to stay in or was it a day procedure? ? im not looking forward to it as I personally dont think it will work. I have had four botox ops too I totally get the life limiting thing as the whole thing effects ure life. going to the toilet every 40 mins is not fun!!

[Matildathecat]

Ilove, very best wishes for your surgery. Really hope it's successful. And thanks for sharing the update on the stimulator. Doesn't sound a goer, really.

Let us know how your surgery goes when you are able.x

[Ilovefluffysheep]

I stayed in one night, but that's only because the hospital isn't local, and they wouldn't let me travel alone on the train after a general.

Had Botox too which also didn't work. Was happy to try though, as neither of these things available locally, and at least I can say I've tried everything before putting myself through this massive op.

Very very scared.