Mets Day 286 - Of Artificial Sphincters

In the past few days I've been exchanging emails with Gary Steinberg, the Chicago surgeon who did my RCP and neobladder last year.  I emailed him the following:

"I’d welcome your input re my options. I continue to have nighttime incontinence, with its attendant sleep deprivation. On Sept, 14, 2012, Trinity Bivalacqua stripped away some of the scar tissue in the bladder neck. Per his instructions, I continued with CIC 2x daily. On Nov. 21, you advised me to continue with CIC, checking for overflow incontinence. I catheterize before going to bed when I feel that I am not able to void completely, but usually have less than 50 ml left. The times that I’ve catheterized in the middle of the night after leaking, I usually have less than 150 ml, so my leaking does not appear to be overflow incontinence. Recently, I’ve noticed that I’ve had to strain more when voiding. My flow usually is weak and sporadic.  My questions are:

1. Should I be doing any kind of physical therapy to help with the nighttime incontinence? If so, what, and with whom?

2. Should I be evaluated to see if there is additional scar tissue or another physical problem that can be corrected to help reduce the nighttime incontinence? Should you do that, or should I have my local urologist do that?

3. I leak at night, even after voiding. When I leak, I wake up and find it difficult to go back to sleep. Is there anything that can be done to help me be less sensitive to that, apart from taking Ambien or Lunesta?

4. What options are there to help me with the incontinence? David Pulver of BCAN mentioned a sphincter valve. Should I consider that? Or should I consider having the neobladder changed to an IC?

5. Should I schedule an appointment with you? Obviously, flying out there is not convenient for me, but I’ll do whatever is appropriate to try to address this.

6. Are you aware of any other clinical trials or other therapies I should be doing to minimize the risk of metastization?"

 He responded as follows:

"Thank you for your note and follow-up. Your nocturnal enuresis is problematic. From what you describe it does not sound like overflow incontinence. If you are able to catheterize yourself then I think that a bladder neck contracture is unlikely. Medications such as Ditropan or Detrol may potentially help increase your bladder capacity as well as decrease any bladder hyperactivity you may be experiencing which may be a cause of your nighttime leakage. However, these medications may cause constipation and make it more difficult for you to void. Other causes of nocturnal enuresis include loss of neurologic control of the external sphincter."

"I think that your options include a urodynamic assessment of your neobladder to assess capacity, compliance and pressures to see if we can make a diagnosis to direct therapy. We have implanted artificial sphincters in some patients as well.  Please let me know if you would like to come to Chicago for the evaluation and we will arrange it for you."

I also exchanged emails with Gary Schoenberg at Hopkins, and he also recommends that I go back and see Dr. Steinberg.  Apparently it's best to have the surgeon who built the neobladder mess around with it.  So another trip to Chicago might be in my near future.  What I need to find out is whether I would have the assessment done and, if it suggested that an artificial sphincter is appropriate, have that implanted during the same trip, or have different trips.  

Here is some information on artificial sphincters:

A YouTube video with a patient experience and illustrations is here.

The WebMD article is here.

The Medscape link is here. 

Here is a a recent review article, Artificial Urinary Sphincter: Long-Term Results and Patient Satisfaction.  

Bottom line:  An artificial sphincter can help, but it's not perfect.  But aside from my wife, what is?