Yesterday had the appointment with the urologist who specializes in male
and female incontinence.  I was told a lot yesterday that I had never heard
before, so get a cup of coffee and read on.  Remember I am not advocating,
just reporting as best I can what I was told.  This doctor has been at Duke
for 30 years and did his first artificial sphincter implant in 1974 if I
remember correctly.  He has performed over 1,000 of these operations, so I
guess you can call him experienced.  You can probably guess his
recommendation, but he went into why each therapy option would not likely
work for me.
   Chapter One.  It was the best of times, it was the worst of
times...sorry, wrong book.
   Chapter One.  The Kegel god is dead.  He told me that the Kegel
exercises were normally effective for men with lower level leakage.  I don't
think he quoted an exact figure, but I left with the impression of something
less than 50 ml per day.  According to their measurements I was leaking 120
ml per day.  I had to keep a "Bladder Diary" for three days prior to the
visit to record the volume of each void and each time I leaked with an
estimate of low, medium, or high.  I also had to bring in my soiled pads
from 24 hours before the visit.  I felt that what I brought in was a "normal
day" for me, so I think the estimate was probably on target.  Anyway, he
said the Kegels would not help me because of the degree of leakage.
   Collagen injections.  He said that this too was not likely to help me
for two reasons.  One, the degree of leakage was to great, and two, the
effectiveness of this therapy was not good.  It helps some men, for others
it does nothing.  Just not a reliable therapy for my case.
   The "Sling".  Which one?  Now there are two.  He just returned from
Austria where he observed four operations using the new procedure.  The old
one involves stapling tissue, artificial or tissue from your own body, to
the pubic bone in order to compress the urethra.  This was also not
effective for leakage over 100 ml, and the basic procedure, like the
collagen injections, did not have a high success rate.  However, this new
procedure, also called the "sling" in order to guarantee confusion in the
future, has a different approach.  Instead of compressing the urethra it
supports the sphincter in the natural position that it would have had before
the RRP.  Here he told me something I have never heard before.  As we know
the sphincter at the base of the bladder is destroyed in the RRP.  However,
the remaining sphincter is partly in the prostate, so it is damaged when the
organ is removed.  We are left with a damaged sphincter to start off with.
He also explained that the prostate supported that sphincter, and after it
is removed it is positioned differently and the current thought is that this
contributes to the incontinence.  Between the damage to the sphincter and
the positioning it is remarkable that anyone is fully continent after RRP.
Anyway, this new "sling" procedure puts the tissue in so that it repositions
the sphincter and supposedly that will help it to return to normal function.
There have been only a few of these performed so far, all in Europe, so
obviously it will be a long time before we know if this is an effective
alternative.
   So, no Kegels, no collagen, no slings.  What is left (he never talked
about the clamp)?  The artificial sphincter (I suppose he uses the AMS 800,
but he never said that explicitly).  It is an outpatient procedure.  The
insurance here covers it.  They put it in and wait a month for healing
before activating the device.  It has an expected life of 10 years (it is a
mechanical device, so it will wear out eventually) although he has patients
that have had one in for 15.  There are two main complications.  Mechanical
failure earlier than expected.  He had one fail as early as 15 weeks.
Fixing it involves removing the device.  Time for the tissues to heal.  Then
reimplant a new one.  Failure rate for that is around 2.5% for experienced
surgeons.  The second failure is when the urethra is damaged by the
compression device.  Again, that involves removal, time for healing, and
reimplantation with the compression device at a different location.  And,
that failure rate is also around 2.5%.  He was clear that men with the
artificial sphincter often do still wear a pad of some kind because there
can still be some leakage.  He said most of his patients wear "panty liners"
and not the absorbent pads like I now wear.  He also said the leakage was
just drops, nothing like what I now have.  I have read here that some of you
leak some, but do not wear a pad because it is not bad enough to show
through.
   Oh, on the cysto they did find that I do have scar tissue at the
anastomosis.  He said the opening is about a third the size that it should
be and that he would fix that during the surgery if I elect to have it.  The
opening looked nice and round, no rough edges, just smaller that what it
should be.  Due to the small opening they were not able to put in the
catheter to do the urodymanics test.  They do that to test the pressures in
the bladder.  He also said that the smaller opening was not the cause of my
leaking (but why not have that fixed first, and then see if it helps the
incontinence?).  The sphincter was clear and normal by the way.  No sign of
damage or deformity.
   I think that is it.  I did not mean to be so long winded, but he told me
a lot during this visit and I wanted to get down as much as I could
remember.  I figured that some of this would be of interest to present and
future members of the leakers club.
   Will I have the surgery?  Do not know.  I am not anxious to have yet
another operation, but I admit that this is seductive.  On Monday I had a
bad leakage day and did not heed the call of the drooping drawers and ended
up wetting my pants (at home at least, not at work).  Tuesday was a more
normal one pad day.  On the internet what I have read indicates that the
surgical alternative is for men with "type 3 stress incontinence".  Not sure
what that means, but it sounds like bad leaking.  Is one pad a day "type 3"?
I will contact my primary care doc and the uro that did the RRP to ask for
an opinion.  The wife is not happy about me going under the knife again.
Cost does not appear to be an issue, but I will confirm with Blue Cross that
they will pay for this.
   And, if I go that far, do I go all the way and get the penile implant
too?  Do they have a remote control for these devices so you do not have to
go around digging in the groin looking for the buttons to push?  What
happens if you have to pee real bad and you push the erection button
instead?  Do you piss on your shirt?  Getting off topic here, aren't I.  Why
is it not Friday.  Oh, another damn Harry Potter book comes out tomorrow.
God help me.  The wife wanted to be at Barnes and Noble at midnight to get
her copy.  Curtis, what am I going to do???
   Hope some of the above is of value to other men with the incontinence.
   Thank you.
David S.