www.incontinentsupport.org

Has anybody tried the interstim sacral nerve stimulator??? One of my urologists suggested that I undergo surgery to have it implanted. It doesn't look like a good fit for me but he's on my case that Foley catheters cause cancer......I think it's a small risk. I don't like the sound of having something stuck in my spine or the possibility of being out of work for up to 8 weeks while I recover from this. For the chance that it "might" work. Can anybody relay some real life experiences?

PB&J32,

Consider your options carefully. Interstim also is available for bowel incontinence but my gastroenterologist recommended against it because 1) it is a surgical procedure, 2) there still are reliability issues with the equipment and, if it fails, it requires surgery to remove. 3) when the batteries run out it requires surgery, and 4) it only helps a percentage of the users. For urinary incontinence, about half the users find no significant improvement and about one third have it removed. My doctor said to wait a few more years to see whether the hardware issues were resolved.

You should be able to research the failure/rejection rate and balance that against the odds of cancer. Tough choice.

--John

I'm not really concerned about cancer so much as I think anything is going to give you cancer these days. As far as incontinence, mine is pretty light and always occurs after I make the toilet. But I could use the reduction in urinary frequency. I'm going 15-25 times a day and am using foleys to keep me out of the bathroom all day, also to allow me to sleep and ride in the car more than 45 minutes. Most of my incontinence issues could be managed with a pad/pullup combo which I wear to work. I prefer regular diapers at home though that is a lot of overkill for me. I'd rather be over protected than under protected, I know everyone here feels the same way.

I just went through a spinal stim blocker from Medtronic, this was installed for pain in my groin and my leg. It has worked very well on my pain. The pain from the surgery is pretty bad. I had 38 staples in my back no fun at all. It was said they could do the same for my incontinence, I will stay with my diaper combo, I have been cut on enough and after being in diaper for a while now I will stay in them. I have a back pack with all my products needed and my controller for the pain controlling unit. Most would say well you have been through the surgery, why not do it. I myself have had enough and I will carry my back pack.

One of our local hospitals is advertising interstim for bowel incontinence management. The interesting aspect of their newspaper and TV advertisements is that they feature patients who have been successfully treated. These are all local folks, known to many of us. That folks could come out about their bowel incontinence, even after it has been treated, speaks volumes about the breakdown of the stigma. Although I'm not a candidate for this surgery, HOORAY!

Patrick, that is good news for stigma reduction. However, re my previous note, the InterStim implantation still has serious shortcomings.

--John

John, you are right, I use it for pain and you have to adjusting it, it does help me with my condition very well, but it is to early for me to say much.

I've decided not to go for the interstim. I sent an email to the doctor with follow up questions as I was directed by him to do. Is now been 6 weeks since the appointment and I haven't heard a thing back from him. But I did some reading on my own. He already told me that I couldn't work at my job as a firefighter during the 2 week trial period, I'm also reading about a 3-6 week recovery period after the permanent placement. I can't take the potential 8 weeks off from work. Then it says to avoid strenuous work and harsh/ sudden movements etc. I'm a firefighter and work in one of the most unpredictable jobs on earth. I don't thinks it's for me. I'll have the wife cath me when I'm home and I'm miserable.......

I thought the cancer risk was after 10 years of being catheterized and then only a slight increase in risk. I suppose you just have to way up what gives you the best quality of life. As well as the catheter I also have the spinal cord stimulater implanted with wires from this going down my spinal canal.

I could always have the catheter taken out after 9 years and 51 weeks then I should be ok. ( only joking ).
I have always found it difficult to decide on surgery ( and I have had lots ) because I have never had surgery for a life threatening illness. If they told you " you must have this operation of you will be dead within a year" then it's easy you have the surgery. But choosing an implant that may or may not work is hard.
I would give it a go and if you do I hope it works great.

4wheeldave.

I am considering an interstem. I have been incontinent for a lot of years. The last 4 I've been in a Duette Foley. I have had Prostate cancer, had the prostate removed, NO CANCER!!! The foley is very comfortable, BUT! I want to give the Interstem a try. I want to be free again!