10 replies to this topic

[mellowgator]

i just started the interstim trail and i am wondering if anyone has tried this procedure and if so was it successful. supposedly if this works i will be able to void normally without cathing and it should keep from leaking in between caths and stop me from having to go as much. if the trail works i will have a device implanted surgically. so far i haven't had to uriniate but once today but i wasn't sure if i was supposed to turn up the stimulation while trying to void.

if anyone has any feedback i'd sure appreciate it.

thank,

mellowgator

[megatrig]

Hi,

I tried SNS a while ago now then funding for it was withdrawn! Long story!!

Ok my understanding is!!

Bladder and Bowels can be stimulated. I went to try bowels. It worked fantastically! You leave it on, pulsing constantly. At 2,3. Have a suppository, or manual stimulation. Then I emptied in 20 mins!

Bladder. Years ago Prof Brindley started these to void the bladder in spinal injuries. They still get used but I don't know much!

GUESSING!! You would need to turn up the stimulation to trigger the nerve pathways to empty your bladder. I'm surprised your consultant hasn't talked you through this!

Good luck. I'm still looking at it!

[araitn]

Sorry, I can't answer your question. I just wanted to encourage you to keep us updated with your results and to wish you good luck!

[Tetracyclone]

Mellow One,

I am excited by your trial.Urinating once during the day is hardly enough, though. Pee more and tell us about it.

[lavenderthistle]

Mellow you secret keeper

Hope this works, let us know. I pee in a timed manner. Usually every 4. I'm sure that has little bearing on your trial, but going every 4 seems to keep the uti's away....at least for me.

I'm really excited for you! Hope you don't mind me mucking up your thread.

[Kelsey]

I completed the trial for the sacral nerve stimulator a few months ago. The aim was to help with my bowels and the trial went really well.

To cut a long story short, I had a phone call yesterday and I am going in on Wednesday to the implant fitted permanently. I'm really excited as the trial worked so well, I hope with the permanent sns, I can try and get a little normality back. I asked whether I would be asleep when the surgery was done and they said no, but I will be sedated. Apparently it takes about an hour or so to do the op. If healing goes well, I might get switched on before Christmas otherwise it will be 4th Jan.

[Scorpio81]

Hi there,

I know several people who've had the SNS trial and permanent implant done in order to cure their urinary retention. Most of them had very good results from it, so I know how successful it can be. A few people have had ongoing problems though, mainly chronic infection resulting in the implant being removed, but I don't know what the overall rate of that happening is.

My neurologist spoke to me about it as a mean of helping control my bowel incontinence, however there are a few issues for me that may prevent me from having it, such as the nature of my nerve damage (spina bifida) and the fact that i'm about to have my third spinal surgery involving fusion with bolts and screws into my sacrum and pelvis. I may pursue this in the future, as it is a pretty clever piece of technology that could make a real difference to me. We shall see.

I'm pleased to hear you've had some success with the trial - I would take that as a pretty good indicator that the permanent implant will serve you well. Do you have a specialist urology nurse overseeing your trial, or at least someone who knows how it all works? If you're unsure about settings, you should contact them as I believe the settings can vary between individuals. Anyway, good luck with next step, let us know how it goes

Kelsey, good to hear you've got the permanent implant coming up soon. I'm a bit surprised that you've been told you'll be awake but sedated - all the other girls I know who've had it had the implant bit done under GA. Out of curiosity, what hospital will you be having it done at?

[mellowgator]

well so far i haven't been able to void without cathing but i my bowels have really stepped up. i woke up both mornings of the trail with ad and both mornings i was full of poo. so i would give this an a+ for the bowels. however i haven't been able to empty my bladder without a cathater. i only had to go once today so my frequency is down.

so i'll see how it goes. the jury is still out here.

[Kelsey]

Scorpio81, on 11 December 2011 - 03:45 AM, said:

Hi there,

I know several people who've had the SNS trial and permanent implant done in order to cure their urinary retention. Most of them had very good results from it, so I know how successful it can be. A few people have had ongoing problems though, mainly chronic infection resulting in the implant being removed, but I don't know what the overall rate of that happening is.

My neurologist spoke to me about it as a mean of helping control my bowel incontinence, however there are a few issues for me that may prevent me from having it, such as the nature of my nerve damage (spina bifida) and the fact that i'm about to have my third spinal surgery involving fusion with bolts and screws into my sacrum and pelvis. I may pursue this in the future, as it is a pretty clever piece of technology that could make a real difference to me. We shall see.

I'm pleased to hear you've had some success with the trial - I would take that as a pretty good indicator that the permanent implant will serve you well. Do you have a specialist urology nurse overseeing your trial, or at least someone who knows how it all works? If you're unsure about settings, you should contact them as I believe the settings can vary between individuals. Anyway, good luck with next step, let us know how it goes

Kelsey, good to hear you've got the permanent implant coming up soon. I'm a bit surprised that you've been told you'll be awake but sedated - all the other girls I know who've had it had the implant bit done under GA. Out of curiosity, what hospital will you be having it done at?

I'm having the op done at the Manor in Oxford. I must say though that I am really worried about being awake. My daughter is driving me to the hospital and then home again straight after the op.

[mellowgator]

i had the leads removed today. i was in a lot of pain from them and wet the bed the last two nights. i also wasn't able to go without cathing. i was also having extreme ad and a fever. i then went online and read a lot of people who have had to remove theirs and suffered permanant damage. there was also a lawsuit against meditronics for kickback to dr.'s. a lot of stories of leads breaking and device breaking and then having to undergo another surgery to fix this. apparently after the first surgery if anything goes wrong you are on your own. they don't pay to remove it and often the dr.s drop the patients who have problems. so that's a big no thank you from me.

so i'll just self cath. at least i know how to deal with that

[Tetracyclone]

Wow. Thanks so much for the information.
Damn but profit motive is such a terrible way to conduct medicine.