I suffer with complete bladder retention plus sudden occassion uncontrolable urges, so basically it is all or nothing, I know many people on the board have bladder issues, so I thought I would update you on what’s been happening with me. At the moment I self catheterize.
The end of last month I had a trial sacral nerve stimulation implanted. This means that a thin wire was inserted through the sacral part of the spine, a stimulator was attached to this but on the outside of the body.I have huge plasters going across my my backside to hold everything in place which I have to keep on for a month. The month is up tomorrow.
The proceedure to implant the wire was done under general anasetic because I twitch and get cramp, generally it is done with a local but you have to be able to lie still. There was no problem with this I was in and out the same day.I have had to keep a diary for two weeks before the op and then for the month with the nerve stimulator in situ. If successful the implant a permenant wire and stimulator under the skin.
It has been a very uncomfortable month the plaster keeps sticking in me and pulling and it is quite a squash into my jeans. You can’t shower or bath and of course you have a box attached to the wire, which I have kept getting tangled up with.
I have had some success with it though. I had been able to pee once or twice a day,( it took about 2 weeks for this to happen) the rest of the time I was still using ISC. But the urgency had completley gone. I had been taken tablets to stop it but they left me with a very dry mouth, when I stopped the tablets the urgency went from one or two times a week to at least once everyday. I was told to stop the tablets 2 weeks before the operation so we would get a true effect. The other benifit is that the coccyx pain that I have endured for a number of years had eased considerabley.
You will notice I use the word ‘had’ - Well on Friday the stimulator stoppped stimulating! It’s lights still flashing but there is nothing happening. I think it must be to do with the wire into my spine
Tomorrow we are meant to be doing an ultra sound of the bladder to see if it is emptying and review the dairy I have had to keep, and make a descion as to whether it is worth going for the full implant, but I’m not sure what will happen now.
Will it have all been worth it, well I will find out tomorrow.
Hi Twist, Gosh that all sounds complicated!! If it works sounds brilliant. I hope it sorts you out. I’ve gone down the SPC route and Botox, the Botox is wearing off after 10 months now. Back to urgency and some leakage. ill keep my fingers crossed for you tomorrow Sara
Twist, How exciting that you are ‘pioneering’ this fairly new gadget. Someone on this site did mention it about a year a go. lt is supposed to help with bowel as well as bladder control. l did look up who in my area who did Sacral Stimulation - and not far away at Solihull Hospital they have clinic. l have had a SPC for 18yrs - and it has worked so well for me but l do suffer with bowel control. lf this stimulator would work for both problems l would be keen to try.
Fingers crossed that they can get yours ‘tuned in’ and working well.
I was expecting a yes or no answer. Instead the consultant wants me to have a perminant wire implanted but still have the stimulator externally. If the results from this are positive they will then attach and implant an internal stimulator.
Apparently as this wire is stitched in place so I will not have to have the massive plaster on my backside, which is a relief and I will be able to shower. ( I don’t quite understand why they didn’t do it like this in the first place).
I must admit I was disappointed not to get that straight yes or no, but I should have learnt over the last few years that this is pretty much the norm for me. So It will be back to the operating theatre at the beginning of July.
Thanks for letting us know what is happening Twist. Sounds as if they are still in the experimental stage - taking it step by step.Lets hope the outcome is successful for you. lts about time something new can be offered for anyone with bladder/bowel incontinence.
Hi, mmm it does sound good, if it is installed inside…but the thing stuck to your backside doesnt sound so nice…as you have said!
I met a woman, about 2 yrs ago who had a stimulator box put into her abdomen to help her wee, as she also had severe retention.
The implant worked and she was happy with it.
I am having a kidney scan on Thursday, prior to having an spc fitted. I suffer from both retention and awful urgency. i have to get up twice in the night and am knackered with it.
I expect the spc to have initial difficulties, but will ride them through, as my life at the mo is very marred by a mis-behaving bladder.
ill keep my fingers crossed for you tomorrow 
Sara