I was diagnosed back in November.  As I posted before, my regular
opthamologist wanted to send me to a glaucoma specialist to confirm
her diagnosis and have all the tests done that she couldn't do (she
has a small office here in our rural community and just doesn't have
the equipment).

So I went to see Dr. D, supposedly the best glaucoma specialist in the
state.  He did the tests and praised my opthamologist for catching my
glaucoma so early.  He gave me a couple of freebie bottles of Xalatan
and said to use one drop each eye before bed, told me to come back in
a month, and that was that.  Like, literally.  

So I went home and did everything wrong of course and the next morning
woke up with bright pink swollen eyeballs and I was alarmed.  I called
my regular opthamologist and got an emergency appointment immediately,
only to be told that what I was experiencing was normal side-effects,
not to worry.  Whew, that was scary for a few hours.  I was also shown
the proper way to put in the drops (the squeeze at the base of the
nose and all that).  I thought to myself "why didn't the specialist
tell me all of this and save me the first-day scare?"  But whatever.

So time comes for my monthly check up with Dr D the specialist.  That
was Monday.  I had a new concern:  I have developed tics in both
eyelids which sometimes last for up to 45 minutes (not seconds) and at
times prevent me from seeing properly.  I mentioned this to Dr D and
asked him if this was a normal side-effect.

His response was "The REAL question is what the pressure is..." [flips
through chart] "and it seems the answer is unchanged.  So I'm going to
change your drops."  

I was a little taken aback by the lack of an answer to my question,
and I ask "What about the side-effects, like the eyelid twitching?"

Response:  "The side effects of the new drop will be different."

And he gets up to leave the room!

So I'm getting exasperated now, and ask "Okay, but what about the
twitching?  Andl what are the side effects of the NEW drop?"

He looks at me for a second and then says, "In some patients,
respiratory distress."  And then he DOES leave the room.

One of his assistants then leads me down the hall, hands me two
bottles of Betimol and tells me to use one drop each eye first thing
in the morning.  And that is that.

So on the ride home all I can think of is "respiratory distress?" and
when I get home I look up Betimol on the Web and yes I know that many
patients can frighten themselves by doing their own research - but I
found one of the major side effects of Betimol conflicted with my
medical history.

The thing is, if he had discussed *just the three major side effects
listed* I would have been able to tell him oops, looks like we have a
problem here.  Just as the first time he could have saved me some
grief and the time of my regular opthamologist in explaining side
effects and usage of Xalatan, again he saves the extra 90 seconds and
exits stage right.

As I sat and thought about all of this, I made up my mind to not take
the Betimol, see my regular opthamologist and explain the situation
and let her take it from there, which she did yesterday.  I have an
appointment with a new glaucoma specialist, Dr G, in a couple of
weeks.  She checked my pressures and told me not to take the Betimol,
but to let Dr G make his own fresh diagnosis.

I guess what I find so frustrating about this situation is that Dr D
never made ANY attempt to communicate with me about my treatment.  He
didn't even tell me how to use the medications properly.  When I asked
about side effects, it seemed to annoy him ("what the REAL quesiton
is...").  Well, we're even.  He annoyed me, too.

This put me between that proverbial rock and its accompanying hard
place.  If I had used the Betimol and had had a bad reaction, I could
see where it would be my fault for not *insisting* on information and
taking control of my own health.  Then again, if I did insist over and
over that I needed more information to be an informed partner in my
care, I can see how that would be construed as being a difficult
patient and get the "who here went to medical school?" lecture.  And
to be fair there is some validity to that, but that is WHY I was
asking for information in the first place!  He knows, I don't.  What's
so hard about that?  

In discussing this with my regular doctor, she told me that many
patients do not want to know anything about the mechanics of their
care, they find it scary and do not want to deal with it.  Which is
fine!  I can see how some people could feel that way.  I, however, am
not one of those people and the simple fact that I asked questions
should have been enough to alert Dr D of this, if he had had that as a
concern.

So just as there are two types of patients - those who want to leave
all in the hands of their doctors, and those who want to be informed -
I think there are two types of doctors.  Those, like my local
opthamologist, who are ready and willing to answer all questions and
address all concerns and keep the patient completely informed, and
those, like Dr D, who either believe the patient is incapable of
understanding the mechanics or who is "second guessing" a diagnosis or
treatment by asking questions.  Or maybe is just too busy to worry
with things like patient questions, who knows.

Well, I found out that the two personality types don't mix, and I am
hoping that my new specialist and I will mesh.

I swear I'm not trying to be difficult.  I just want to *know*.
Without knowledge it's just too easy to be frightened.  There is so
much at stake here.  I don't want to second guess anybody, but I do
want to make sure that my doctor knows all he needs to know and
sometimes that just can't be done by checking off the little boxes on
a patient information sheet, just as it can't be left to a leaflet
inserted in a box to tell me everything I need to know.

So that's my rant.  My husband Joe says there ought to be a standard
lecture for new glaucoma patients:  "Welcome ot the World of
Glaucoma!"  =)   While he's joking... to be honest, that would have
been kind of nice.  Live and learn.

Leigh

--
Consequences, shmonsequences, as long as I'm rich.  - D. Duck