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Medical Forum / Diseases and Disorders / Prostate BPH / April 2004

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scarring at the bladder neck

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Dave - 08 Apr 2004 14:28 GMT
After a cystoscopy and two TURPS, my uro now says I have scarring at
the bladder neck, which still prevents me from urinating on my own. He
says since I can't self-catheterize myself, I will have to wear an
indwelling, permanent catheter the rest of my life. Does anyone know
1) what, if anything, can be done about scar tissue at the bladder
neck, and 2) a way to urinate without having to wear the indwelling
catheter the rest of my life? Thanks for you comments, guys.
Stuart - 10 Apr 2004 20:30 GMT
> After a cystoscopy and two TURPS, my uro now says I have scarring at
> the bladder neck, which still prevents me from urinating on my own. He
[quoted text clipped - 3 lines]
> neck, and 2) a way to urinate without having to wear the indwelling
> catheter the rest of my life? Thanks for you comments, guys.

That's hard news, Dave. It seems you need a second opinion. I don't
know if traveling is an option for you. If so, Mayo clinic has an
outstanding reputation. Also, I came across this site from a urology
treatment center in Florida.

 http://www.laserurology.com/

It states PVP is indicated for "bladder neck contractures and/or
urethral strictures". That would suggest that surgery to remove the
scarred tissue is at least a possibility.

Hope you can find some treatment that will improve your condition.

 Stuart
Rob Marks - 11 Apr 2004 18:45 GMT
Dave,

I wouldn't accept this as the final word.  As has been suggested, I
would seek not only a second opinion, but a third, a fourth and
perhaps a fifth.  And I would be very selective whom I consult -- not
just another uro out of the Yellow Pages.

First, I would go to BestDoctors.com, take out a membership (I believe
it's appx. $35 for one year) and enter your zip code and ask for best
urologist.  BestDoctors.com lists only the top four percent of
specialists in the various fields.  Unless you live in the New York or
Los Angeles areas, you'll likely find that there are only one or two
Best Doctors listed in your area, so you might have to expand your
search and be ready to travel a few hundred miles.

I would also include in your search for opinions some of the top PVP
uros who have been mentioned in this group over the last couple years.
One that comes to mind is Dr. Lin in St. Augustine, Florida, who has
done over a thousand PVP procedures and also a Dr. Laube in Santa
Barbara, California, who seems to enjoy a very fine reputation. I
assume you're Medicare eligible, so this won't cost you an arm and a
leg, excepting travel.

One key issue that is most often not understood by the average patient
is that not all urologists are created equal.  There are huge
differences among them as a consequence of such factors as skill in
using their equipment, knowledge, experience and use of good judgment.

Dave, you should not give up!  It will require both patience and
perseverance to line up these top experts and manage appointments,
travel, etc.  But, you've simply got too much at stake to toss in the
towel now.

Whatever, you decide to do, I wouldn't recommend going back to see any
of the urologists who have served you in the past.  They seem, from
what you've posted, as very bad news.  Avoid them.

And when you have lined up your appointments, be sure to take someone
with you -- a relative or friend -- who can run interference for you.
In other words, an advocate who can deal with the red tape, ask the
right questions and have some knowledge of how to deal with the
medical profession.

Finally, don't be tempted to make a decision after receiving only one
opinion.  To make the right choice, you need to have spoken with four
or five experts and reach a consensus.  Only then can you feel a level
of confidence that what you're choosing is the best and right choice
for you.

Good luck and please keep us posted!

Best,

Rob
Zork - 11 Apr 2004 23:57 GMT
>Dave,
>
>I wouldn't accept this as the final word.  As has been suggested, I
>would seek not only a second opinion, but a third, a fourth and
>perhaps a fifth.  And I would be very selective whom I consult -- not
>just another uro out of the Yellow Pages.

---------
Well written and I agree 110%  ! ! ! !
Don't give up and quit at this point !
Keep searching.
Zork
Dave - 14 Apr 2004 16:12 GMT
Thanks, guys, for your response. Unfortunately, I am 59 years old and
don't qualify for Medicare yet. I'm a member of an HMO and do not have
much money to seek outside opinions, much less pay for treatment
outside the HMO. So, I may be at a dead end here. I see my urologist
again on Monday. I will urge him to consider other treatment options
other than me wearing this indwelling catheter the rest of my life,
but I'm not optimistic that he will respond. He keeps saying any
operation of the bladder neck will just result in more scar tissue.
Very frustrating. But thanks anyway for your encouragement and
suggestions.
Zork - 14 Apr 2004 23:49 GMT
I don't know what HMO you happen to have, but all those that I am
familiar with will allow you to go to other physicians in some
circumstances.  Don't give up !  Tell them what the problem is and you
need a second...third...fourth opinion.
Don't give up ! !
Zork
-------

>Thanks, guys, for your response. Unfortunately, I am 59 years old and
>don't qualify for Medicare yet. I'm a member of an HMO and do not have
[quoted text clipped - 6 lines]
>Very frustrating. But thanks anyway for your encouragement and
>suggestions.
 
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