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Medical Forum / Diseases and Disorders / Glaucoma / February 2004

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Young Person Getting a Trabeculectomy

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jeffery - 03 Nov 2003 19:47 GMT
Hello,
I will make this short, so it's not to overwhelming to read. I am a
24yr old male, and I was diagnosed 16yrs ago with glaucoma. Only in
the last 2-3 years has there been damage, and it has been significant.
Currently, I am taking Timolol, Alphagan, and Xalatan, and my pressure
are still surfing around 22-24, and they are not stable. I have tried,
Lumigan, and I've also used Cosopt, and the Neptazane. Although the
Neptazane achieved results of 19 (good), I got very sick, within a
couple weeks and had to quit using the drug.

I have had SLT in both eyes in the last 6 months, and there appears to
be no change of significance. At this point, I've lost about 33% of my
right eye, and about 7-10% of the left. The left is not that bad in
comparison.

My doctor(s) feel that the best solution is a Trab. (right eye). Of
course I am nervous, and I am wondering if there are any other young
peoples that have had this surgery, and what their outcome/experience
was. My understanding is that younger people heal differently, and
more aggressively, however I can't seem to find any "data" to back
that statement up.

What experience have others had? I don't know what to do, as I will be
blind by 30 at the rate I am loosing vision.

Much appreciated.
MC - 03 Nov 2003 19:55 GMT
> Hello,
> I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
> Much appreciated.

Can't help you with direct (or even indirect experience) but I can offer
a word of support and encouragement.

By the way you may find some useful info at the glaucoma mailing list at
Yahoo. Go to Yahoo and search around -- I'm on the list but I can't
remember quite how I got there!
dhg2001 - 03 Nov 2003 21:44 GMT
> Hello,
> I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
> Much appreciated.

Hi Jeffery,

I am 28 and I have had glaucoma pretty much from the time I was born. When I
was about your age, I was taking Alphagan, Betagan, Xalatan, and Neptazane,
and yet my pressure kept going up. The doctor did a trab, but a few months
later the pressure came back up again. My doctor also told me that young
people tended to heal quicker which presents a problem with this type of
surgery. Eventually, the doctor put a drainage tube in my eye to lower the
pressure.

When I first read your message and questions I was kind of hesitant to
respond because this procedure didn't seen to work for me. But I think you
deserve an honest answer to your questions. Also, keep in mind two things,
1). Not everyone will react the same way to certain medicines or medical
procedures, and 2) As you state in your message you will probably lose your
sight if you do nothing. I am not a doctor, but my advice would be to go
forward. Also, you can always get a second opinion, of course.

Dan
Earle Jones - 04 Nov 2003 01:08 GMT
> Hello,
> I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
> Much appreciated.

*
Jeffrey:  Greetings!

I had very successful trabeculectomies in both eyes about three or
four years ago.  Since then, my pressures run 16-18 with *no* drops at
all.

But -- I am 72 and you are 24.  As you know, one of the problems in
trab surgery is the re-healing of the lesion.  And healing does take
place faster in young patients.  Talk to your ophthalmologist about
what can be done if healing occurs and the trab needs further work.  
My understanding is they can "needle" the trab to maintain outflow if
healing occurs.  But this has not been necessary in my case.

There are other alternatives, including the placement of a stent, or
small tube, which can accopmlish the same thing as a trab.

Good luck and please keep us posted on your progress.

Best regards,

earle
*
I am an engineer and not a health-care professional.
John - 04 Nov 2003 15:01 GMT
>Hello,
>I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
>Much appreciated.

Most likely, your doctor is advising a trab because he thinks that is the
best option.  However, as a check find out if he does shunts also.  If he
does not do shunts that could be a signal for your getting another opinion
from someone who does both operations.

.

John
Rick Cohn, M.D. - 05 Nov 2003 00:58 GMT
> >Hello,
> >I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 31 lines]
>
> John

Hi Jeff (and John, and other posters here),
    It's time for me to add my two cents.  I don't have any "data" on
trabs in people your age, but studies on congenital glaucoma and trabs
in children show a lower success rate due to agressive healing.  In a
trab, a flap is made in tht sclera, the wall of the eye.  In order for
this to function, it needs to drain fluid through it to a space
beneath the conjunctiva, the skin of the eye.  If the flap heals back
down gradually, the IOP will rise again.  Personally, I prefer a
drainage tube implant in younger patients.  Tubes don't heal shut
(although they can have other problems, like tube malposition, causing
damage to the cornea or clogging of the tube by the iris).  Also, the
IOP response with a tube may not be as brisk as with a
well-functioning trab.  Therefore, you may still need a drop or two to
control your IOP.  This is common.  Nevertheless, the most important
factor here is your youth, and the need to keep you seeing for many
more years.  Tubes simply last longer.  As was mentioned, if your
doctor doesn't do tubes, find one who does both (preferably a glaucoma
specialist) and ask them their opinion.  Good luck.
--Rick Cohn, MD
Glaucoma Specialist
Winter Park, FL
Simon - 04 Nov 2003 22:49 GMT
> Hello,
> I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
> Much appreciated.

I had a trab in 1983 when I was 24, because it healed over so quickly (years
before 5FU and Mitomycin) it was revised a month later and then kept my
pressure in the low teens for 20 years before I had another problem.

After a bleb revision and 2 lots of needling they suggested a shunt tube
because I still heal over too quickly. There are issues with those too!

I suggest you discuss with your doctor what the alternatives are and their
relative pros&cons before you proceed. A trab is a lot better than going
blind! As a youngster you need to consider the long term implications of wha
t they suggest.

Good Luck!
Bill484923 - 05 Nov 2003 13:08 GMT
I've had trabs in both eyes One disastrous one great. The disaster was ana
infection cost me the eye Other the pressures are good and eye is stable. You
really have no choice but to have them surgically repaired
Dave - 26 Nov 2003 04:51 GMT
> Hello,
> I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
> Much appreciated.

Sounds like surgery is really your only option at this point. I've had
many trabs over the years.  My last one, when I was 29, was very
successful.  Fortunately, Mitamycin was around then and appeared to
have helped a lot in slowing down the healing process. I'm still on
timoptic in that eye, more for psychological reasons than much else,
the IOP hangs around 10 without much variation.  Its been 9 years
since that surgery.

Best of luck to you.
Dave - 26 Nov 2003 17:30 GMT
> > What experience have others had? I don't know what to do, as I will be
> > blind by 30 at the rate I am loosing vision.
> >
> > Much appreciated.

I also wanted to add, that if you haven't yet, ask your doc how many
of these he has personally performed and what percentage of the
outcomes he would consider a success.  Not all surgeons are created
equally and the outcome of the surgery is very dependent on the
surgeon performing it.  Don't let performing surgery on you be a paid
learning oppurtunity for your doctor.  Your sight is too precious.
If you don't feel comfortable with your current doc doing it, it is
very much worth spending the money to travel to another city if
necessary to have a more experienced surgeon do it.
Rick Cohn, M.D. - 27 Nov 2003 16:27 GMT
> > > What experience have others had? I don't know what to do, as I will be
> > > blind by 30 at the rate I am loosing vision.
[quoted text clipped - 10 lines]
> very much worth spending the money to travel to another city if
> necessary to have a more experienced surgeon do it.

I disagree here...if you are seeing a glaucoma specialist over 35, the
answer will be hundreds to thousands.  Do you think we keep a list or
an accurate count of all of the surgeries we do?  The answer is no.
While it is true that some surgeons are better than others, the
success of a trab is very much NOT related to the skills of the
surgeon and is probably 80% based on how a patient heals.  Those who
heal to aggressively have an increase in their postop IOP...those who
don't may end up with an excellent result.  Those who develop thinning
of the conjunctiva may end up with a wound leak and serious eye
infection...those who don't should do just fine.  These are not
"surgeon-related" factors but rather "patient healing-related
factors."  Sure, you don't want to see a 70-year-old surgeon or one
who finished residency training last Tuesday, but most others are a
wash.  You want a surgeon who takes the time to explain what he/she
plans to do and why, what the risks are, and what alternatives there
might be, and if he/she uses antimetabolites routinely like mitomycin.
Also good to get some "word of mouth" support from others who have
used him/her.  But, if you ask him/her "how many of these have you
done before?" you'll probably just tick off the surgeon.  Good luck,
Rick Cohn, MD
Glaucoma Specialist
Winter Park, FL
Dave - 28 Nov 2003 21:45 GMT
 But, if you ask him/her "how many of these have you
> done before?" you'll probably just tick off the surgeon.  Good luck,
> Rick Cohn, MD
> Glaucoma Specialist
> Winter Park, FL

Offending a surgeon would be my last worry if I were losing my
eyesight to glaucoma. If he has had a successful career performing
these surgeries, I don't understand why he would get upset to answer
such questions.  From a patient point of view, this is not the time to
be dealing with someone who has such a fragile ego that they cannot
take a few direct questions, if asked in a reasonable manner, without
getting ruffled feathers.  Someone's eyesight is on the line here,
without it one cannot drive, do their job, go to the grocery without
assistance, etc.  The psychological impact of severe vision loss is
devastating.  Often blind people are made to feel as second or third
class citizens, with accompanying loss of self-esteem.  I speak from
first hand experience, not from what I've heard or read.

If a doctor can't handle a few questions about his history, I wouldn't
want him performing my surgery. The surgeon is performing a service
for which he will be paid handsomely.  In other areas of our society,
if one performs a service for money, one should expect to be asked
questions about his service history.  Why should medical doctors be
exempt from such questions?
I understand that a doctor  might not have exact numbers, but
certainly he could give an idea.

I agree that opinoins from other patients who have had surgeries
performed by this doctor would be invaluable to have, but let's face
it, the chances of any of one's neighbors or work colleagues having a
similar procedure done by the same doctor are pretty small.  It's not
like you're asking "who did you use as your realtor" or "can you
recommend a good family attorney".  The chances of a given individual
needing glaucoma surgery in her life are much much smaller than the
probability of these normal life events.
Rick Cohn, M.D. - 29 Nov 2003 04:24 GMT
>  But, if you ask him/her "how many of these have you
> > done before?" you'll probably just tick off the surgeon.  Good luck,
[quoted text clipped - 32 lines]
> needing glaucoma surgery in her life are much much smaller than the
> probability of these normal life events.

First of all Dave, relax...you don't have to jump down my throat.  I'm
posting here in my own free time as a service to the readers here.  I
don't get paid for this, and I assure you, I can find better things to
do with my time.  And yes, I DO get a little ticked off if a patient
asks, "so how many of these have you done?"  If that makes me
insecure, well too bad, then maybe I am...do you forget that we are
people too?  You act in your post like we're a bunch of hardened
technicians who don't understand how important your eyesight is to
you.  Of course we do.  There isn't an ophthalmologist who practices
who doesn't have to reassure patients regarding the threat of vision
loss from glaucoma, macular degeneration, diabetes, and other terrible
conditions. If your doctor is an empathetic person, then he/she shares
your anxiety about having to do surgery.  I may do glaucoma surgery
very frequently, but I never look forward to it.  Nevertheless, you
miss the important point I made...it doesn't matter if the surgeon has
done 100 trabs or 10,000 trabs.  If you have a thick vascular
conjuntiva (common in young patients or black patients) or certain
types of glaucoma (e.g. uveitic glaucoma, neovascular glaucoma) you
are much more likely to heal aggressively and therefore cause your
surgery to fail, regardless of your surgeon.  It is more important to
have someone who feels fully comfortable using antimetabolites and can
explain which they use and why.
John - 29 Nov 2003 07:13 GMT
> .............................................. you
>miss the important point I made...it doesn't matter if the surgeon has
[quoted text clipped - 5 lines]
>have someone who feels fully comfortable using antimetabolites and can
>explain which they use and why.

Dr. Cohn,

That is a very helpful widening of perspective.  It could be read to mean
that less than 100 trabs are enough to perfect operating technique, but
many more are needed to achieve good post-op treatment abilities.

Your descriptions of tube surgery have been part of the reason that I am
satisfied with having had tube surgeries on both eyes, rather than trabs.
You have my gratitude.

John
phineasfogg - 29 Nov 2003 09:54 GMT
My situation is different from yours but I will give you my thoughts anyway.
I was 51 when I was diagnosed with low tension glaucoma 3 years ago.  I have
significant optic nerve damage and significant field of vision loss in the
left eye.  Right eye has good field of vision. [a big consideration]  I was
also advised to undergo a trab and was told of the healing issues as 50 was
still "young."

I've kind of given up posting or reading here because you will not likely
find here (or organized anywhere else) the group of patients who declined to
undergo a trab or any sort of eye surgery (eg laser) for glaucoma.  You will
not read their reasons for not undergoing surgery.  You will read about the
more or less successful surgeries and even the unsuccessful surgeries, but
it is unlikely you'll learn why some (perhaps, many of us) chose never to
undergo a trab.  You will not hear from those who declined a trab and never
went blind.  As far as I know, there is no study following up on those who
CHOSE not to undergo trab.  I emphasize "chose" because the posters here are
homogeneous and generally swear by the procedure.  When I dared to suggest
such a study, I was accused by posters of proposing to withhold treatment
from patients--poor misunderstood me
.
My thoughts... To begin with, it seems that going blind is a foregone
conclusion; I chose not to undergo a trab or any glaucoma surgery because
that, strictly speaking, is simply not so.  The chances are that you
will--there is apparently a much smaller chance you may remain status quo.
The only definite thing I understand from all of this (reading posts, my
reading up in general, talking to  my glaucoma specialists--two of the tops
in Manhattan) is that whatever damage has occurred is irreversible...as of
today.  I  am aware lowering the pressure reduces the chances of further
damage, but you could have a "successful" surgery and indeed lower your
pressures, and still go blind.  You won't likely hear from this group
either.

Worse, there are, IMHO, so many things that could go wrong (eg pressure
becoming too low) even aside from the usual infection or malpractice issues
that I wondered if any such eye surgery was justified when I could still go
blind even if nothing at all went wrong AND my pressures were lowered.  When
both eyes have significant vision loss and your pressures are sky high, and
you're younger with plenty of years left to enjoy and require good sight,
then you may not have "anything to lose" by a trab or other procedures.
Nonetheless, you might consider the recovery period, the different
aggravations that doctors might consider trivial (such as cataracts which
are promoted by the surgery--my doc said basically "so what, cataracts are
curable"), additional drops, the need for recurring procedures, blurry
vision, etc. etc which you should get your doctor to spell out in detail.

I am not a doctor and would welcome a doctor's opinion on whether s/he has
ever treated or followed up on a similar patient who declined surgery.

I hope my thoughts balance the picture.

> > .............................................. you
> >miss the important point I made...it doesn't matter if the surgeon has
[quoted text clipped - 17 lines]
>
> John
Rick Cohn, M.D. - 29 Nov 2003 22:50 GMT
> My situation is different from yours but I will give you my thoughts anyway.
> I was 51 when I was diagnosed with low tension glaucoma 3 years ago.  I have
[quoted text clipped - 47 lines]
>
> You raise many valid points here from potential serious
complications of surgery to the inevitability of vision loss, with or
without surgery.  Over the last ten years I have seen and learned a
great deal from my glaucoma patients.  Some have refused or delayed
surgery against my recommendations.  Of those, some maintained their
central vision throughout the remainder of their life.  A few others
have gradually lost a significant amount of vision, either in one eye
or both.  While that saddens me, a physician can only give
guidance...the patient is the ultimate decision-maker regarding
his/her own healthcare, as it should be.
    I have had some patients lose vision even after glaucoma
filtering surgery, either from progressive optic nerve damage or from
too low of an eye pressure with retinal swelling.  There even was a
gentleman with a dreaded eye infection through a thin bleb that
occured two years after surgery.  I think about these patients often.
Still, I don't regret the efforts to try to save their vision, even
when these efforts were fruitless.
     On the other hand, I can easily come up with hundreds of names
and faces belonging to those who have had successful trabs and tube
shunts while under my care...those with better postoperative
pressures, nice blebs, improved filtration.  Many showed progressive
optic atrophy before surgery that came to a hault afterwards.  As I
mentioned, a small minority slowly get worse.
    Is surgery for everyone? Certainly NOT.  The reason you won't
find studies on patients refusing surgery is 1) obviously going
against one's physician's advice is not all that common, and 2) I find
that many patients who refuse surgery are not very compliant with
regular office visits, making it hard to include such patients in a
study.
    Regardless, I applaud you for your courage and determination
here.  My concern, of course, is that you are quite young in the grand
scheme of things...I expect your optic nerves will need to last
another 40 years (hopefully).  Another concern is that some patients
with low tension glaucoma can show significantly progressive field
loss over just a few years.  If you find your field loss increasing,
you might consider a tube shunt down the road...I have found these to
have fewer complications than a trab.
    Either way, I wish you the best of luck.
--Rick Cohn, MD
Dave - 30 Nov 2003 00:34 GMT
.

> First of all Dave, relax...you don't have to jump down my throat.

Rick, having read your response I suggest you take your own advice.  I
wasn't jumping down your throat.  This is an open forum for discussion
of opinions.  I didn't attack you personally but took issue with
something you wrote.  You're obviously giving your opinion from a
physician point of view, I'm giving mine as a patient.

 I'm
> posting here in my own free time as a service to the readers here.  I
> don't get paid for this, and I assure you, I can find better things to
> do with my time.

The same can be said of most people who post to newsgroups Rick.  I'm
not sure what your trying to imply from your statement but it sounds a
lot like "if you disagree with me, I'll take my toys and go home."

And yes, I DO get a little ticked off if a patient
> asks, "so how many of these have you done?"  If that makes me
> insecure, well too bad, then maybe I am...do you forget that we are
> people too?  You act in your post like we're a bunch of hardened
> technicians who don't understand how important your eyesight is to
> you.

Rick, as in all large and diverse groups of people, such a blanket
statement does not apply to all ophthalmologists.  I was making no
such statement.  And again, none of my statements were aimed at you
personally.  I don't know you.  You may be the best glaucoma surgeon
in the world, you may be the worst, but I don't know you from Adam.
Some ophthalmologists are empathetic to their patients feelings.
others are not.  Some are on ego trips, others are more humble when
they dispense their services and knowledge.

And on the contrary, I know all too well that ophthalmologists are
human and therefore can make mistakes.  I was the victim of an
ophthalmologist who didn't realize what a pandora's box he was opening
by performing surgery on my eye.  Soon after that surgery he realized
he was in over his head and had to send me elsewhere to have emergency
surgery performed to correct his mistake.  While I'm sure he did feel
bad, if the worst had happened, he would have still collected his
multi-thousand dollar surgery fee and continued with his practice
while I would have been left nearly sightless trying to pick up the
pieces of my life.  This is why I question surgeons, so I feel as
confident as possible that they are qualified. I don't accept a
medical degree hanging on an office wall as sufficient proof any more.
I make no apologies if you find that offensive.
Rick Cohn, M.D. - 01 Dec 2003 04:39 GMT
> Rick, as in all large and diverse groups of people, such a blanket
> statement does not apply to all ophthalmologists.  I was making no
[quoted text clipped - 18 lines]
> medical degree hanging on an office wall as sufficient proof any more.
>  I make no apologies if you find that offensive.

You are right that this is an open forum for expression of ideas, and
I support you in your right to air yours, even if our approaches may
be different.  Certainly if I had been through all you had with your
eyes, I would probably have a similar view.  Sorry to hear about all
you've gone through.   No, I don't find you or your approach
"offensive," Dave, it's just not the way I handle things with docs I
go to.  For example, when I lost my Mom to cancer a few years ago, I
knew she had a rare type of sarcoma in the abdomen.  I searched the
internet to find the best sarcoma guy at Sloan-Kettering in NY.  I
read all I could find before I talked to the guy.  Ten different
sources told me this guy was the local guru on sarcomas in NY.  Then
when the time came, I didn't need to check with him about his
credentials or how often he had seen cases like my Mom's.  I could
tell immediately by his pompous attitude that he had tremendous
confidence in his treatment regimen...I just wanted to know if he was
going to recommend chemo, what kind, surgery, or both chemo and
surgery.  Again, the problem for me is that a person can talk the
talk, but that doesn't mean he can walk the walk.  Unfortunately,
you've learned that the hard way.
    Oh, by the way, the average reimbursement for a trab is not
"multi-thousands of dollars."  It's generally between $900 and $1200
depending on the area its done and which insurer is paying.  That also
includes ALL of the postoperative visits for 90 days after surgery,
which can be quite a few after a trab.  I may see a postop patient 15
times after a trab during the first 3 months, each time for free.  I
assure you, no one is getting rich off of glaucoma surgery.   You'd
have to do more than a handful of trabs each week to pay back the over
$100,000 of student loans that most students leave med school with
these days.  Don't get me wrong, I'm sure your doc isn't ready for the
bread line.  It's really cataract surgery that pays the bills in the
office, not trabs (too much work and heartache for doctor and patient
alike).  Anyway, I wish you the best, Dave,
Rick Cohn, MD
Winter Park, FL
Dave - 06 Dec 2003 03:22 GMT
> > Rick, as in all large and diverse groups of people, such a blanket
> > statement does not apply to all ophthalmologists.  I was making no
[quoted text clipped - 53 lines]
> Rick Cohn, MD
> Winter Park, FL

Thanks Rick, I appreciate your response.  I'm also sorry to hear about
your mom, but I'm glad you found a doctor for her that was confident
and capable.  It can be a comfort, even if a minor one, to know that a
loved one received the best care possible.
Dave
Tom - 04 Dec 2003 10:12 GMT
I had a trab in the left and right eye when I was about 39 and I am over 55
now with no problems and a consistant pressure of 10-15 with no meds until
this year. I just recently went on timoptic in one eye as I want to keep
pressure lower than 15. Have no fear of the trab, it's a good solution and
the results without are not good at all. Cheers, Tom
>> Hello,
>> I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 32 lines]
>
>Best of luck to you.
Tom - 17 Feb 2004 23:01 GMT
I had a trab when I was about 39 in "both" eyes. They worked perfectly for
over 12 years then one went bad. I would do it again and again if necessary
if my vision was being lost at the rate yours is. I wish you the best.. Make
sure to go to the best doctor available when you get your trab.

>Hello,
>I will make this short, so it's not to overwhelming to read. I am a
[quoted text clipped - 22 lines]
>
>Much appreciated.
Donald Singleton - 18 Feb 2004 12:35 GMT
Tom,
 I haven't had trab myself, but I think my doc is preparing to tell me it's time --
pressures rose a bit last time, and Lumigan didn't help as he had hoped it might.
I've had all the drops, two rounds of ALT in both eyes, and pressures always never
quite low enough. I'm a lot older than you, but if I were you I think I'd run, not
walk, to follow my doc's recommendations.  If he's not a glaucoma specialist, try to
get a referral to one. You have a lot of years ahead of you, Lord willing, and they'll
be a lot better if you can salvage the maximum possible percentage of visual fields.
  Best of luck to you.

  Don Singleton (age 67, no white-tipped cane yet, thank God!)

> I had a trab when I was about 39 in "both" eyes. They worked perfectly for
> over 12 years then one went bad. I would do it again and again if necessary
[quoted text clipped - 31 lines]
> http://www.newsfeed.com The #1 Newsgroup Service in the World! >100,000 Newsgroups
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