www.incontinentsupport.org

I had a inter Stem put in for pain and after getting the machine dialed in plus pain medication my pain is finally tolerable. My medical team adjusted for three leads to fire at once and it lock up my bladder by accident. Scare the crap out of me because, now I couldn't go. With my doctor blessing, now I shut down my bladder and I use catheters to drain my bladder. This is the first time I have been out of diaper in a very long time. So the test is for a month, use inter Stem during the day and diapers at night. I know it has been brought up on here, but I'm giving it a try. At least it is giving my skin a brake that it needs.

Good luck with your interstim test. I guess my fear would be that turning your interstim off at night might force you to take opiates to dull your pain enough to enable you to get some sleep. I would make a really bad drug addict, because my body really does not like opiates. If you must take them, and if they work for you wonderful. Keep us informed.

Patrick,
You are right about the opioids, but I have a night time channel that adjust to my movement while I sleep. It will change strengths to help cover pain no matter if you are a side or back sleeper. What they have been able to program to help me has been great so far. Like I have posted, I have finally got a good medical team together to help me and my family through this.

Oh god, I have to HIGHLY recommend you DO NOT get it permanently implanted. I've been through the test already and it alone was a disaster.

First, right from the interstim reps, they say it is 80% effective on 50% of the people who try it. Think about this- 80% of 50% is only a total 40% effective. Note even a major improvement like they tout- just a little bit effective or barely above neutral. The other 60% who get it done have negative effects from it. Not exactly a good selling point, and the whole reason they spin those numbers.

Second, You have already said you need to dial the tester down for night and up again during the day because of pain. Once implanted, there is no more dialing it in any more. You'll be stuck on just one setting.

Third, Have you ever heard of Chinese water torture? Each drop of water in you eye is almost nothing and certainly not painful. It adds up over time though. Eventually that slight annoyance becomes absolute torture. Well, interstim starts of with just a slightly annoying tingle doesn't it? Guess where this is going to lead when it's permanently implanted? Think about it. Heck, after just three weeks for me (it took too long trying to dial it in for me), that even that little tingle down there had already felt more like a constant 9 volt battery shock I'd get on my tongue.

Fourth, my own trial implant actually screwed up my sacral nerve. I wen't into with bad urge incontinence and a slight neurogenic blockage. The interstim literally screwed up the signals coming and going through my nerved so I came out of it with bad urge incontinence and a really bad neurogenic blockage. I've subsequently had to have 4 urinary sphincterotimies and probably need a 5th. Worst yet, I probably could have gotten away with just one sphincterotomy before the implant was done.

God I wish I had seen you post about thinking of getting this test done before. I would have warned you then. My advice now is to just keep the settings low enough so you simply cannot feel it at any point. If you are lucky enough to be in the minority then by all means get it implanted. Just also realize you will need it re-implanted every 10 or years since the battery does wear out. If not, the when the test time is over with (or even immediately right now) make sure they schedule you to have it removed as soon as possible.

Brian,
I already have had the device for almost a year but it was for pain control only. The bladder control was a extra. I'm sorry you had trouble with this device, but it has been a blessing to me. The test on controlling my bladder also has went very well. It has taken my wife and I a lot of time and effort to assemble the medical team we have, which has made it possible to get back as far as I have. I will admit this device isn't for everyone but I Didn't have any option left. I know my battery although its rechargeable has a ten year life, but when you live with the pain I have, if you got Five minutes of relief it would worth it. Thank you for your information and taking the time to explain it all, because it may help someone else.

Hey that's great it worked for you after all! Even a 40 percent chance for improvement is better than nothing. Especially when you're up against already living with so much pain to begin with.

What has always astounded me is how most everyone can have so varied degrees of problems, with so many varied degrees of symptoms, that all take so many varied degrees of treatments. Take us two pas example, both with similar levels of pain in their bladders. Yet the same interstim device made mine worse, and yours better. I guess that's just how the dice falls, huh. Congrats on winning that gamble, the odds were not in our favor.

We all have different symptoms but, we all have the same problems.We are in it together and we will get through it. The good things is all the knowledge here to pull from. Thank you again, for your information in what to be looking for.

Well here is the up date, I have adjusted good to catheters instead of diapers. The doctor are confident that I will continue to improve. I know I will never be completely out of diapers but finally I have options that I didn't have before.

That makes for a good start!
I hope that you have continuing improvement.

Scott,
Thank you for your support, all I have been through this was a hard discussion just to try. Being I'm totally incontinent I didn't have much for option. My medical team wants to continue to turn it off and on till we have a better understanding on how much control we can get. My doctors spent a lot of time with me on the use of catheters, there is defiantly a learning curve to this. At least I can go swimming without a diaper on if it keeps working.