Symptom Management

It is estimated that 50 to 80 percent of those with MS experience some change in bladder function. This is called neurogenic bladder and is caused by loss of myelin in the central nervous system that may interrupt communication between the bladder and the brain. Various urinary symptoms, including difficulties in storing, emptying, or a combination of the two, may result. During the almost 30 years that I’ve lived with MS, my one unremitting symptom has been neurogenic bladder.
 
I coped by taking oxybutynin (generic Ditropan) to prevent the spasms that haphazardly attacked my bladder; by intermittent catheterization to alleviate retention and prevent overflow; and by always wearing incontinence pads. Still, my bladder fluctuated between emptying spontaneously and refusing to empty at all. I fluctuated between knowing that the situation could get worse and praying that it wouldn’t.
 
It got worse. In November 2004, I fractured my hip and pelvis in three places. The injury further disrupted communication between my brain and bladder. By the time I had any sensation that my bladder was full, it was already emptying. The medications no longer worked. My urologist inserted a Foley catheter to provide some relief from the constant wetness. But my bladder protested its presence with spasms that forced urine to leak around the catheter.
 
I became reclusive, anxious about the odor and skin breakdown that accompany incontinence. After a couple of weeks, I pulled the catheter out and called my urologist. That was when he referred me to Dr. Bernard Hertzman to be evaluated for an Interstim® implant. He said that the device is “similar to a pacemaker for the bladder” and was my “last hope for not having to wear full-sized diapers” for the rest of my life. Intrigued – and desperate – I made an appointment.
 
During that first visit, Dr. Hertzman reviewed my history of bladder inadequacies and the means I’d used to manage them. He described the surgical procedure and gave me some literature about it. In fact, there would be two procedures. During the first, leads attached to an external neurostimulator would be placed near the sacral nerves, which control bladder function. If my symptoms improved significantly during a two-week trial, he’d then implant the permanent, stopwatch-sized device.
 
The Interstim hadn’t been specifically tested for use with MS, so there was no guarantee that it would be helpful in my case. But the results were almost immediate. When I awoke in the recovery room, I realized that my bladder felt full. That was the first time in four months that I’d had any warning before it actually emptied. I left the hospital after just a few hours, wired to a portable control box, similar to a remote control, which allowed me to adjust the level of stimulation.
 
I took prescription pain relievers and slept sitting up during the worst of the pain at the incision sites. Most of the time, I was too relieved and excited to be bothered by the soreness. During the next two weeks, I had only one episode of incontinence. Compared to the number of “leaks” I’d had daily before then, there was no doubt that the trial was successful.
 
When the permanent implant was inserted, only local anesthetic was required. Again, I was able to go home a few hours after the surgery, this time with a larger incision in my hip. There were no external wires to contend with as the instrument was now in a pocket under the skin of my hip. I continue to use a remote control with which I increase or decrease the intensity of the stimulation, as needed.
 
In the six months since the implant, although I’ve had a few close calls, I haven’t had even one “leak” episode. In addition, the Interstim has helped to manage other persistent MS symptoms. The regulation of sacral nerve impulses, which also control bowel function, and the ability to stay better hydrated, have enabled me to decrease my laxative use by more than half. I no longer have the dry mouth that’s a side effect of bladder control medications. I rarely have to catheterize. Most of the time, my bladder obeys my cue to empty.
 
My only semicomplaint about the system is that the device sits so close to the skin that it’s visible under snug-fitting clothing. Dr. Hertzman says I can cure that by eating more ice cream. He also says that by the time the system has to be replaced, in about eight years, it will probably have been streamlined to a much smaller size.
 
Dr. Hertzman cautions that the Interstim might not be a permanent solution for my bladder malfunctions. As my MS status changes, so may the system’s efficacy. That’s okay. I’ve learned not to expect permanence in any aspect of life with MS and its treatments. For now – and as long as it lasts – I’m enjoying the restored dignity, confidence and freedom provided by the Interstim.
 
Judith Lynn Nichols has been married for 35 years (to the same man!), and has two grown daughters. She is the President of MS-EAS (Emergency Assistance Services), a national, nonprofit organization that provides emergency assistance to individuals with MS. She is also the author of two highly acclaimed books, Women Living with Multiple Sclerosis and Living Beyond Multiple Sclerosis, both of which are available through the MSF Lending Library. Call 888-MSFOCUS (673-6287).
 
(Last reviewed 7/2009)