journal notes follow in case Dr. Nitti is interested and for your amusement.
- a high liquid (52 oz) day, low exercise (at computer). Totally dry until about
8:00 PM when over the course of a couple of hours playing Apples to Apples with
friends, my male pad filled to near overflowing. Dry while sleeping but sever
pain in pump area prevented decent sleep.
1/24/10 - low liquid (24 oz)
day, low exercise (watched football playoffs). Dry all day. Pump appears to be
very resistant to squeezing. Takes at least two if not three full squeezes and
then bladder contraction to start flow. Bladder appears to have time to empty.
- Happy birthday to my wife!. A dry night but I know I am not drinking enough.
Two small glasses of water today so far and it almost 3:00 PM. I will drink more.
Wet a little climbing into the truck but not if I sit first and knock the mud
of my shoes. A self-exam last night revealed a cylindrical mass attached to or
in very close conjunction with the pump. No pain is associated with pinching it
nor is there any "give". It's quite hard. Feels like metal to the untrained hand.
A forgotten part from the surgery? Tumor? Tissue mass/scar tissue, something dislodged
from the pump? A visit to Dr. Nitti may be in order. 4:00 PM another total failure
with wet pants, pee down the leg, male pad totally soaked, wet truck seat, and
embarrassment at the house of the mother of my son's study friend. 7:30 Pm, totally
wet again. Upon inspection the unit has deactivated itself, I have not used it
since awaking. Efforts to re-activate (with a sharp firm squeeze) it result in
more and more fluid moving to the reservoir and the pump becoming more and more
dimpled. There is so little fluid left in pump that I am hesitant to proceed for
fear of passing the point of re-activation. While lying down in bed, I was able
to re-activate the unit and spend a dry night.
1/26/10 - Remained activated
and dry until I voided at 1:30 PM. At that time the unit deactivated. Possible
reasons - user error but use is well experienced in units operation; defective
activation/de-activation valve; air remains in valve unit; position of pump/valve
promotes deactivation. Unit re-activation has proven impossible, to date while
sitting on toilet or standing. Re-activation was achieved at bed time, after another
day in diaper briefs, when lying down. Curiously, no characteristic "sound" or
feel of activation was experienced. Attempts to activate will still on the toilet
caused a near complete emptying of the pump bulb confounding further efforts.
Appears that activation and deactivation are arbitrary and without certainty or
fluid is bypassing a deactivated valve and lodging in the reservoir until successful
activation while on bed. regardless of the reasons, it is not a useful and reliable
solution at this time though superior to 24/7 diaper brief u se.
- A dry night. Voided without deactivation issues upon arising from bed. Pump
is resistant to squeezing and elusive to grab perhaps causing inadvertent deactivation
as sometime, two hands are required; one to stabilize the unit and one to operate
the pump. Two handed operation, disappointing as it is, is carried out with great
caution to avoid deactivation; sometime successfully, sometimes not. remained
dry through night. No "surprising" deactivations and no conscious change of prior
pumping method. It was a low stress day at the computer
1/28/10 - Up early
with heavy labor - wife's car needed pushing/rocking to try to free lock transmission.
Had stretch yoga class. Dry throughout. Voiding working well. Pump manipulation
becoming more "natural". Bulb resistance still seems stiff but prior experience
was with damaged unit. Still concerned about the difficulty of re-activation.
Will experiment at some point. It truly does not feel right. Another total failure
at about 2:00 PM, after visiting the toilet but checking that all appeared well.
The unit was deactivated. Reactivation was a difficult, painful and frustrating
and eventually I gave up only to have the unit activated withing a hour of so.
When and how it happened escapes me.
1/29/10 - A day of dry but perhaps
only because I restricted myself to no activity, low liquid intake and little
use of the unit.
1/30/10 - Awoke dry. Drank nothing. Have been at my computer
and am still dry at 1:44PM. Voiding is awkward but with care I have succeeded
once and there appears to be no deactivation yet. Bulb pressure still seems to
be an impediment to comfortable use of the unit. Unit deactivate after use at
dinner party around 8:00 PM. Fortunately, I could leave before embarrassment.
Suspect it happens because of insufficient resistance in the deactivation valve
slide and/or the location/position of the pump unit. Have not yet tried to reactivate
but expect I must get to bed and experience the usual pain and difficulties. Success
is not assured.
Note to Dr. Nitti (1-31-2010):
via a small epiphany, I had hoped to be able to present some encouraging information
about the function of my AMS 800 today. Unfortunately, an event that just occurred
has been a disappointment.
Last night, it appeared that, although deactivation
is way to easy and activation provides no positive feedback, activation does work
and might not require the effort I apply awaiting the expected positive feedback
I have grown accustomed to. The unit keeps me so dry when activated, I am hesitant
to mess with even this degree of success and have worked at identifying a suitable
workaround. I thought I had it too. East deactivation/easy reactivation; just
have faith. I expected I might be able to reactivate while still at the toilet.
that has not proven to be the case.
20 minutes ago I completed a successful
bladder voiding deliberately using a convenient and "normal" pump technique. As
might be expected, the unit deactivated. But, if reactivation was easy but "silent"
as I expected, I should be able to apply a few extra squeezes while on the toilet
and be set to go.
That did not pass and the unit remained steadfastly deactivated.
then went to the bedroom and lay on the bed and attempted to re-activate by applying
the painful flex and squeeze techniques. To work in the past, these must be applied
2-3-2010: It occurred to me last night, that if
I deliberately deactivated the unit and then followed the usual procedure to activate
it, I might be able to restore harmony to the universe.
I tried this experiment
Deactivation was very easy, no surprise there. I left about
1/2 to 3/4 of the fluid in the pump. I tested deactivation by peeing and I was
I then gave a quick squeeze to the pump bulb and immediately
felt the swoosh of fluid and I was activated again. The pump bulb filled quickly.
I appear dry. It was an easy and more normal experience than any previous attempts.
we wait and observe both the level of dryness and the appearance of unexpected
deactivation. I'll try to force some fluids to really work the system.
Urologist has been at the annual conference. I promised to track my experience.
He are the results I sent to him:
Dear Dr. Nitti,
I hope the annual
gathering of Urologists was fun and informative and that you got to meet Dr. Ng.
I think she's wonderful but I doubt there was much to be learned about my situation
from her. Still, there is no harm in meeting good people and maybe an alliance,
regardless of how casual, will serve both your careers.
I kept a journal
while you were gone. I was surprised that it was not more positive. I thought
we had this thing licked. I have developed a usage technique that I thought would
allow for actuating the pump while staying very clear of the deactivation button.
It requires placing the thumb on the backside of the deactivation button side
of the unit and using the middle finger to stabilize the unit at the tube connectors
while folding the pump bulb back with my index finger. This may result in a bulb
failure at some point but I thought it was working. My notes would suggest otherwise.
- Significant leakage. May be seating position but is my usual chair and normal
2/7/10 - Significant leaking. Unit probably de-activated
during prior use. Would not re-activate until I thought to depress de-activation
button firmly several times. Re-activation was then easy and feedback was received.
Returned to dry state. This action is consistent with the Operating Room Instructions.
I'm disappointed I did not remember this technique and was forced to re-discover
it. I wonder why neither of my doctors nor any of the several people associated
with AMS have used this method or called it to my attention.
The ORI also
mention that the pump bulb might feel softer after activation. This is definitely
not my case. The pump bulb is very firm and tubular shaped. I wonder if this is
because of too much pressure in the system or a valve failure. The ORI imply that
the pump bulb should retain it's flattish shape when activated and not be expanded
to a tubular shape. I wonder if the units behavior cannot be traced to too much
pressure in the system or a pressure balance issues caused by improper valve behavior.
I'd hate to loose the pressure, I haven't tested this yet, dryness achieved if
the pressure is a contributing factor but reliability and safety come first, I
suppose. However, since the construction material is semi-permeable (to air only???),
I may lose fluid (and dryness) over time, regardless.
The ORI also imply
a pump position lower in the scrotum than I am experiencing. My current rather
high placement may contribute to accidental de-activation. The second unit, easy
to operate but requiring the lowering of my trousers to reach, lay nearly horizontal
on the "floor" of the scrotum. This caused irritation and considerable burning
pain all the time and under all conditions but especially when walking or trying
to sleep. Sleep was frequently interrupted by the pain. Apparently, the unit must
hang free to the extent that the bulbs tip is not resting on the scrotum's floor,
therefore irritating it, yet is far enough below the groin to prevent accidental
de-activation during normal use or activity. It's just a guess.
later: Voided, pump is flatter and easier to manipulate. What's up with that?
I wonder if I de-activate and re-activate several times if, with each cycle, the
system will begin to "normalize". I'll try that experiment. Although easier to
operate the unit may still de-activate in error. I'll keep an eye open for that
activity. Also, I'm still concerned about position and will continue to keep an
eye on problems it may cause.
About midnight: Voided and noted that pump
bulb had returned to it's extra firm and round state.
2/8/10 - Dry all
day. No stress. Minimum liquid intake.
2/9/10 - Significant leakage while
attempting to achieve erection. Exercise was attempted while standing and there
was no recent sitting that might account for the leakage. Unit appeared activated
and pad was dry, last successful voiding was more than 10 minutes hence. Pump
bulb was round and firm. Leakage was significant and at one point spurted as blood
was beginning to flow to corpus cavernosum. This occurred long prior to reaching
climax or any significant degree of firmness. Too discourage to continue with
2/10/10 - Dry all day. No stress. Some shopping. Light fluid
2/11/10 - 3:00 PM - Unrealized deactivation. Upon realization I
was slightly deactivated I depressed the deactivation button several times, as
mentioned above, and gave a quick squeeze to the 3/4 full bulb. There was a sense
of partial, the feed back suggested the valve did not open completely, and a loss
of about 3/4 of the fluid in the bulb. With little fluid remaining, I gave a good
quick hard squeeze and felt the unit complete the activation. Apparently dry the
remainder of the day.
2/12/10 - Tested to determine if pads were needed
at all times since experience was beginning to show that with care the unit could
be kept activated at all times necessary and that I was dry when the unit was
fully activated. It was a computer day building an apparel catalog ; moderate
liquid intake and little up and down activity. My underwear and pants' crotch
were unacceptable wet by the end of the day 4 hours of work. Appears there is
a slow leak either because of minuscule deactivation, a very small cuff failure,
leg pressure, or some unknown factor.
2/13/10 - Worked hard for 3-5 hours
burning brush, splitting logs, and loading a trailer. Lots of activity and upping
and downing. Was wearing pad but did not notice any leakage. The pad may be giving
me a false sense of security. It was painful as pressure could be felt building
up behind the cuff when a heavy load was lifted, etc. I can understand this but
it was very disappointing nonetheless. Inactivity is no sure thing as far as keeping
dry is concerned but it does not result in hours of subsequent pain either. Inactivity
is not a price I want to pay but the alternatives are not encouraging.
- Appeared dry during the day, light activity and light liquid intake and a 2
hour ride home from a weekend with friends.
2/15/10 - Wet the bed. Pump
bulb appeared fully engorged. Wetting was small, 1/2 to 1 tsp. but far more that
the amount left in the urethra after urinating. I have learned that immediately
after urination and after the bulb has been given time to refill, there is no
more than one small drop left in the urethra when milked from the cuff to the
tip. Of course, if the cuff is not closed at this time, subsequent bladder activity
may have time to add additional fluid to the urethra which will eventually work
its way out even when lying down I suppose. Either pressure on the pump from moving
my legs during sleeping, a small slow cuff failure or some unknown factor causes
this leakage. (I appear to be cursed with the need to continually wear some form
of protection - acceptable to many, I am sure. But, I am not inclined to spend
my days in that condition especially when the pump is so difficult to actuate.
I am completely disheartened.)
NOTE: The small hard cylinder (originally
about the size of a 1/4 inch piece of No. 2 pencil lead) discovered in the area
of the pump and apparently almost, but not quite, floating free in my scrotum
after the swelling from surgery went down, has grown to an amorphous blob about
three times the original size. It appears affixed to the scrotum wall. Squeeze
has hard as you will and there is no pain. I have no idea what should be done
about this or who should do it. I am deadlocked and can not make a decision or
identify a path that might lead to diagnosis and/or treatment. Possibly something
was left behind during surgery, possibly it is scare tissue that continues to
expand, possibly it is something more sinister. At this point it is difficult
to care. I can, at least, research it on the web and may do that at some point.