Pee-lief: Help for Overactive Bladder

What is overactive bladder?

I’ve had overactive bladder (OAB) for years, and I know the mileage markers for all the rest stops on our New Jersey Expressways as well as where all the good gas station restrooms are in a 60-mile or so radius of our house. And my prostatectomy didn’t make things any better in the peeing category. So, about 2 ½ years ago, my urology oncologist referred me to the office “all I do is peeing” urologist, Dr. Wren. (Literally that’s what he told me on my first visit with him.)

Implanted device to control overactive bladder

And that’s the first time I ever heard of the InterStim sacral nerve neuromodulator. To bring that down to layman’s terms as Dr. Wren did for me, left to itself, all the bladder would do all day and night is constantly void itself of urine. But, via the sacral nerve (a nerve that may get damaged with prostate cancer treatment), “the brain tells the bladder all day and night, no, no, no, no, ok and starts all over again each time we pee”. And for many of us, that signal going from the brain to the bladder gets weakened, and the bladder starts getting its way to pee when it wants to, giving us OAB and leakage. And what the implant device does is to help the brain’s signal down the sacral nerve become stronger in the bladder.

Sacral nerve stimulation

To make the InterStim work, the doctor surgically inserts a small electronic device that has several points of contact with the sacral nerve to help the brain regain control of the bladder.

The InterStim is inserted the first time for test purposes, and the controls are external for the test. Then you come back a week later (in retrospect I think two weeks would be better if they’ll let you), and when you come back the decision is yours—it’s not working, and they take it out. Or if you’re satisfied it’s helping like I was, the control device with long-lasting batteries is surgically inserted into your buttock muscle sort of permanently (every 8 or so years I will have to have new batteries put in the control, again surgically, but that can change depending on how strong a signal you ultimately send to the nerve). (You will have a control that you put one end on your butt over the internal control, and the other end is the actual control you use to change the signal strength. (I don’t have a pacemaker, but someone who’s familiar with pacemakers said it sounds very similar to the way you adjust a pacemaker.)

My experience with the device

It took me about two months to work out what was the best signal strength for me. For example, it does bother my back when I’m doing long bike rides (I’m talking 40+ mile rides so I doubt the average person is going to be bothered this way), so I turn it off before the ride and take it back up after the ride, and it takes about 30 seconds to reset the signal strength each time. Likewise, for a while, I took it up a little at night, but I don’t even do that anymore.)

The positives for the InterStim for me are (1) it has helped me tremendously (I can even pass expressway rest areas now without stopping); (2) when you see the internal control device they put into your butt, you know you’re going to set off all the airport alarms. But when I took my first flight with it in, I mentioned I had it to the TSA agent, who said don’t worry about it. So, in total disbelief I went through the electronic screening and no alarm went off (I’ve since done several more flights with both types of screening—the one you walk through and the one you hold your hands on you head--with the same result—no alarms.); and (3) I absolutely don’t feel the implant until I put my fingers back there to find it if I want to change the signal intensity.

The negatives are (1) the biggest one is you cannot have an MRI from the neck down without it being taken out temporarily, (2) both the test insertion and the second insertion or removal are both done under anesthesia, although I feel it was light anesthesia (I would compare it to the anesthesia they use for colonoscopies). I was able to function fine when I got home. (You can’t drive home after the surgery, however) and (2) as the Medtronic rep who was there told me it’s about 50% effective, and I would say that’s about what it is for me. But it really makes my life, especially traveling, much easier.

And although I had it done with a “civilian” doctor (Medicare paid for it), my VA urologist told me they also use it and will maintain my current one. And last year I learned from the VA that they will give me an additional 20% disability just for “an implantable device” such as this (I believe that’s for Vietnam vets only who were exposed to Agent Orange, but it doesn't hurt to ask).

More information

For reference material, Google InterStim and there will be a lot of sites by the manufacturer, Medtronic. (A note in researching the InterStim online, it was first approved in 1997, and I was told that it there is a night and day difference between the devices back then and today. So make sure anything you research is fairly up to date, probably 2010 or later.)

For what I would call non-biased reports, the first below is from the National Center for Biotechnology Information (NCBI), entitled, “Sacral neuromodulation in overactive bladder”:

The FDA’s SUMMARY OF SAFETY AND EFFECTIVENESS DATA (Note: this is for the FDA’s approval of the InterStim for bowel incontinence). But for anyone who REALLY, REALLY wants to delve into the intricacies of how the InterStim works and how it’s placed in the body, this notes it’s the same for both the bowel (approved by the FDA in 2011) and for the bladder (approved by the FDA in 1997).