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Old 09-10-2012, 04:15 PM   #1
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pretty12d HB User
Artifical Sphincter Valve

Hi:

I had an artificial sphincter valve implanted in May 2011 due to dealing with total incontinence. Prior to this intervention, I was going through 12+ pads on a daily basis due to a January 2010 HIFU procedure. Currently, I'm using 3-4 pads daily. My question is this typical (3-4 pads daily) of the experience of others who have also had this surgery performed on them?

Many thanks,
pretty12d

 
Old 09-13-2012, 09:17 AM   #2
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mudrunner HB User
Re: Artifical Sphincter Valve

Pretty12d,

My AMS800 was installed May 30 so I’m just a few months out. I was going thru 2-5 pads (full) a day depending on my activities. I’d give my new AUS about 90% on the good side. I can get thru an entire day now just using a thin panty liner. However, if I wait too long after getting a “strong urge” to go, some leaking will occur. I think part of this is because my capacity is not very large after so many years (12) of going often so as to minimize all the previous leaking. My Uro doc has suggested meds may help to decrease the urge (more bladder capacity) now that the stress is largely under control. Interestingly enough, even at very low urge, if I consciously release my remaining natural sphincter to void, I produce a weak stream with the AUS cuff fully inflated. This indicates the cuff pressure was not set strong enough to completely close off the urethra. The only way to fix this is to use a higher pressure bulb or perhaps use two cuffs. Both of these require another operation…something I’m not anxious to re-experience.

A secondary issue relative to my installation is the pump placement. My Uro doc installed (IMHO) it too far down. The bottom of the pump either pushes way too hard downward or completely rotates underneath the cuff. The former is mildly painful and the latter makes it tricky to find and operate the pump. We’re in discussion as to a solution.

A third issue (not common it appears for someone in my age range) is getting back on my bicycle. I have been riding 100-150 miles a week for many years and was VERY concerned about not being able to continue doing so. For all the years after my RRP I used a seat with a center depression which allowed my ever present pee pad to form down and not press too hard on my remaining nerve bundle. Now with the AUS cuff feeling about the diameter of a quarter there was no way I could sit on that seat. I did a lot of investigation and decided to try a Selle seat that has a very large hole and completely open split all the way to the nose. Additionally the nose drops down (called an eagle beak) so even when sliding forward there is nothing for the cuff bump to run into. I’ve got a little over 400 miles on it and while it causes some discomfort it’s been tolerable so far. Time will tell.

After many years of dealing with these incontinence issues (and other multiple cancer ones) I've come to the conclusion that there is no "standard" response or outcome to most of these medical interventions. There are just too many variables relative to each person's specific physiology and doctor competencies to expect any kind of parity with other people's outcomes. Such is life...a little leaking is better than no living.

 
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