Question: OMG, I never dreamed I would have the opportunity for a consult like this. WOW!
First, I'll say that I have a number of health issues (male, age 75):
1) trigeminal neuralgia, for which I've had reasonable control until
a month ago, and since then I'm suffering debilitating sharp nerve pain, leading me to suspect my gabapentin is no longer effective
(I've been on it for 3 1/2 years).
T. N. spasms are still being prevented by oxcarbazepin.
Recently, I'm now taking Celebrex to substitute for the likely useless gabapentin -- and I'm functioning OKAY again. [Whew!]
Over the years, I have tried other meds for my T.N. pain . . .
In 2011, I had MVD surgery which failed.
but they ended up disappointing me.
2) urine retention, for which I am using an indwelling catheter;
BPH is not large enough to cause total inability to urinate
unassisted, a urologist who did a digital check said, so the next step is to do some verifying by ultrasound.
3) very large inguinal hernia but which causes no discomfort at all,
so, for now I'm putting that issue on the back burner.

THANKS, doctor, for reading this
and for any comment you'd care to make
about my conditions

P.S. I'm vastly underweight, having been
unable to chew without sharp pain during
the past month! (124 pounds; height: 5 ft 10 1/2 inches)
Was surviving on protein drinks.

XXXX

Sorry, but part of my message was inadvertently disjointed, to wit:

"Over the years, I have tried other meds for my T.N. pain . . .
In 2011, I had MVD surgery which failed.
but they ended up disappointing me."

It SHOULD have been:
Over the years, I have tried other meds for my T.N. pain . . .
but they ended up disappointing me.
In 2011, I had MVD surgery which failed.

Thank you Doctor Saha, for your very helpful message!
I shall do my best to take your advice regarding making vegetable broth,
and chicken stew to have the amino acids go into liquid form, etc., as a better
approach to my nutrition. AND to consult with a nutritionist.

Regarding my indwelling cather:
I'm concerned (apprehensive) that even if ultrasound finds the impingement of my urethra and I can get the problem subsequently taken care of, that my lethargic bladder & urethra which have been unaccustomed to doing their job independently, might not return to their normal state of functioning again -- and thus I'll have to REMAIN connected to a catheter. [Yuck!] To me, the prospects don't seem promising, but I hope I'm wrong . . .
I'm not disposed to cling to a faint hope (I'm not inclined to be an optomist).

I've been practicing pelvic floor (Kegel) exercises as has been suggested to me,
but I also wonder if it would help to do this:
Temporarily disconnect and cap the catheter where it connects to the leg bag, so that the bladder gets to feel a sensation of filling up some before I open the catheter for the urine to be released into the toilet (and then re-fasten the catheter back to the leg bag again). Perhaps then to repeat once again the next day?
I can't seem to get my urologist to be enthusiastic about this approach, but I see no reason why it wouldn't be a logical, worthwhile pursuit.

Thanks in advance for your input.

XXXX

P.S.
In retrospect, I do see a disadvantage to my idea about giving my bladder a chance to feel some fullness again:
This method would not be able to get the urethra any practice, because the catheter bypasses any normal muscle control that the urethra would ordinarily have to use, right? Perhaps that's why the urologist could harbor a doubt about the value of my suggestion.

Oh, I see you have responded to my other message. Thanks for your input!

And what you wrote is just what I hope could be done (try to urinate without
a catheter). But one thing I omitted is a detail I'll have to bring up: At the the occasion when the catheter was changed out some time ago because it had a
kind of obstruction, before it was replaced I asked to go to the restroom to try to urinate on my own. I couldn't....but that may or may not be due to a lingering impingement of some sort, because, in my mind, probably in just ten minutes it's not practical for me to expect things to "click" just like that after quite a few weeks of non-functioning.
I also felt rushed while the nurse was waiting for me. I can't help but wonder if more time would have made a difference -- giving the bladder a practical opportunity (like an hour or two) so it could begin to fill -- before expecting something positive (being able to urinate independently).

Thanks again!

XXXX

Thanks for your most recent message and the suggestions.

Tomorrow I hope to have a urologist agree to order an ultrasound test, so that the weight of my prostate gland can be determined as a prelude to deciding on an optimum treatment to proceed with.
As I had written in my initial message:
" .... urine retention, for which I am using an indwelling catheter; BPH doesn't feel large enough that it should cause total inability to urinate unassisted, a urologist who did a digital check indicated, so the next step is to do some verifying by ultrasound."

That's the step I think is essential to have done.
Because there must be some kind of impingement for why I can't urinate unassisted (i.e., without the use of a catheter) -- but since that other urologist had indicated he didn't think the BPH size is the (only?) reason, I definitely want ultrasound verification from the new second-opinion urologist.
I'll report back after the test is performed (assuming he agrees to it -- and I can't imagine why he wouldn't, although I'm not unaccustomed to disappointments) . . .

XXXX


To avert being misunderstood, I SHOULD have written:
"...in my very first message..." instead of "...in my initial message..."

This clarifies with a better choice of words.

Thanks again.
XXXX

Dear Dr. Saha;

Summary of the urologist's perspective:

Diagnosis inconclusive; further testing is
warranted. The preliminary indication
is that the prostate gland size/weight is not
substantial*, probably not hyperplastic, and
may not be what's impeding urethral flow
of urine. At this point, a possible urethral
stricture cannot be ruled out, nor a potential
bladder problem or even a neurologic issue.
*Partly verified the previous monthby another urologist

FYI:

One of several tests that urology wants to perform
involves the insertion of a cytoscope or ureterscope,
but I declined to have either of those scheduled.
They are very invasive (one of the side effects is:
stricture!) I'd be apprehensive and wary of that
occurring because of the prolonged irritation my
urethra has already had to endure during my
extended use of indwelling catheters. And even
besides that concern, there can be significant
discomfort involved for some time afterward from
that harsh test, and I just can't handle any more
pain in the near term.

I'm tired of all the stress and crises in my life;
the scourge and drama of my fierce encounters
with trigeminal neuralgia still linger in my memory,
and .... [sigh] . . . Here's what I would prefer:
What if I just brace myself and try to get a supra-
pubic catheter installed (as an outpatient, with
localized anesthetic administered), in order to
replace my current indwelling Foley catheter and
be done with having to cope with a malfunctioning
urinary system that, so far, seems to defy any
simple diagnosis. (Also, that'll put a halt to what
basically amounts to catheter tube abrasion
against the inner walls of the urethra, and that's
kinda urgent). For my part, I'd consider the
suprapubic method to be a pragmatic work-around
to whatever my actual urological problem might
eventually turn out to be.
The challenge might be how to convince another
urologist to install said suprapubic catheter
without first impelling me to resort to a battery
of tests, some of which I won't submit to . . .

And that's not to say I'm closing the door to an
occasional safe diagnostic procedure. Not at all.
However, I'm not disposed to tolerating tests
which don't fit safe parameters or that involve
an overnight hospital stay or general anesthesia.
I intend to avoid those, oh yeah.

Notes:
1) A Mayo Clinic webpage devoted to urology topics
states that it's contraindicated for elderly men with
severe neurologic disorders to undergo surgeries.
Incidentally, I mentioned this to the urologist whom
I could tell made a mental note of it.
2) Ultrasound of the urethra is one of the radiologic
methods for evaluating suspected urethral stricture.
An ultrasound probe is placed along the length of the
phallus and can determine the size of the stricture,
the length of the stricture, and the degree of
narrowing. This is a relatively safe method and does
not require any degree of preparation -- and it makes
more sense to me than cytoscopy or ureterscopy!
XXXX
3) Prostate size has a poor correlation to the severity
of symptoms associated with urinary pathology
(not excluding bladder outflow obstruction).
In and of itself, the size or weight of the prostate gland
should not be relied upon as the sole determinant
in diagnosing urinary issues.
XXXX
Causes of bladder outflow obstruction that don't
involve the prostate include bladder dysfunction and
neurologic etiology, both of which can cause similar
symptoms, just as my neurologist has stated.
4) There are clinical trials in progress at two U.S.
medical centers to test volunteers for a special new,
non-invasive ultrasound therapy treatment which
"melts" the part of a prostate gland that impinges on
and/or causes constriction of, the urethra. I plan to
follow the progress of that study with interest, even
though it may not be pertinent to my own set of
circumstances . . .

- Yours truly
XXXX

I wrote:

"For my part, I'd consider the
suprapubic method to be a pragmatic work-around
to whatever my actual urological problem might
eventually turn out to be.
The challenge might be how to convince another
urologist to install said suprapubic catheter
without first impelling me to resort to a battery
of tests, some of which I can't submit to . . ."

To amplify that last thought:

. . . primarily because of potential concerns
of (1) safety and/or (2) post-procedure pain.
Plus, I'm feeling almost a desperate (3) fatigue
over the long process that diagnosis is taking.
I won't be able to tolerate tests which
may involve an (4) overnight hospital stay
or (5) general anesthesia.

[FYI: Getting scheduled for a subsequent
appointment with a urologist (specialist
category) in my insurance network means
(6) waiting a minimum of four to five weeks
each time!]
AND I'm reluctant to (7) delay too much longer
for removal of my indwelling catheter --
for the sake of my poor, irritated urethra
lining having to endure cumulative friction
against its walls all this extended time!

One other aspect: (8) My agonizing battles
with horrific trigeminal neuralgia has been
taking a toll on me in more ways than one --
i.e., (9) mentally as well as (10) physically.
T.N. has been an overwhelming part of my life
and should be a major factor to be considered!

All in all, Dr. Saha, I feel reasonably justified
in seeking to have a suprapubic catheter
installed for the long haul. I just hope it can
be arranged, but I'm uncertain of my chances.
I pray things will work out okay.

Thanks again!I wrote:

"For my part, I'd consider the
suprapubic method to be a pragmatic work-around
to whatever my actual urological problem might
eventually turn out to be.
The challenge might be how to convince another
urologist to install said suprapubic catheter
without first impelling me to resort to a battery
of tests, some of which I can't submit to . . ."

To amplify that last thought:

. . . primarily because of potential concerns
of (1) safety and/or (2) post-procedure pain.
Plus, I'm feeling almost a desperate (3) fatigue
over the long process that diagnosis is taking.
I won't be able to tolerate tests which
may involve an (4) overnight hospital stay
or (5) general anesthesia.

[FYI: Getting scheduled for a subsequent
appointment with a urologist (specialist
category) in my insurance network means
(6) waiting a minimum of four to five weeks
each time!]
AND I'm reluctant to (7) delay too much longer
for removal of my indwelling catheter --
for the sake of my poor, irritated urethra
lining having to endure cumulative friction
against its walls all this extended time!

One other aspect: (8) My agonizing battles
with horrific trigeminal neuralgia has been
taking a toll on me in more ways than one --
i.e., (9) mentally as well as (10) physically.
T.N. has been an overwhelming part of my life
and should be a major factor to be considered!

All in all, Dr. Saha, I feel reasonably justified
in seeking to have a suprapubic catheter
installed for the long haul. I just hope it can
be arranged, but I'm uncertain of my chances.
I pray things will work out okay.

Thanks again!
XXXX