Volume 7, Number 1
Winter, 1998
Now That I Have
Glaucoma What Can I Expect?
by George L. Spaeth, MD
"Now that I've been told I have glaucoma, what can I expect?
" This question has to enter the mind of every person who has
just learned that he or she has glaucoma. It may be a sufficiently
frightening question that the person never speaks it aloud. But
it's the sort of question that most physicians dread, because
it asks for projections that are extremely difficult to make.
It asks the ophthalmologist to "play God," and, while physicians
may be respected for their knowledge, they are usually aware that
they have no unique ability to see into the future. Nevertheless
the question is the right one for patients to ask, and it is an
essential one for the ophthalmologist to address with a patient.
The first thing that a person who has been told
that he or she has glaucoma ought to do is to ask the doctor what
he or she means by the word "glaucoma." The word "glaucoma" is
still used in so many different ways, and it means so many different
things to different people, that the question about what it means
for the person to have glaucoma can't really be addressed at all
until there's some agreement on what the word "glaucoma" means.
Expect the Unexpected
The first thing that the patient with glaucoma should expect
is the unexpected. Some types of glaucoma seem so serious that
the physician worries that the affected person is likely to go
blind. Other glaucomas seem quite mild, and the doctor may wonder
if any treatment is necessary at all. But the patient with what
appears to be a serious glaucoma may respond wonderfully to treatment
and not have any further significant visual loss, while the one
with the seemingly mild glaucoma may end up visually incapacitated
because glaucoma in this case proves very resistant to all sorts
of treatments.
Does this mean that the individual affected with glaucoma can't
make any plans? No. While unexpected things are routine, the changes
that occur in most people with glaucoma, once the initial diagnosis
has been made and the initial treatment started, usually occur
slowly over a period of many years. If the patient is alert and
the physician is alert, the different directions in which the
glaucoma is going can be spotted, and new and more appropriate
projections made.
For example, the first patient mentioned above
needs to be counseled at the start that there's a reasonable chance
that he will lose his vision due to glaucoma. But as soon as it
becomes apparent that the response to treatment is better than
expected, a new counseling session is necessary in which the patient
comes to understand that he's doing very well and the outlook
for the future is far more favorable than had initially been considered.
In a similar vein, when it becomes apparent to the physician that
the second patient is not responding well to therapy, it's essential
to share that information with the patient so the patient have
a more accurate idea of where he or she can expect to be 20 years
later.
Remain Vigilant
Except for a few types of glaucoma, the tendency for glaucoma
to cause continuing damage remains with the person for the rest
of the person's life. Thus, the person must not think that he
or she is "cured" and stop being vigilant. There's a great difference
between being vigilant and being a hypochondriac. To be vigilant
means to be alert to warning signs and to exercise appropriate
"preventive maintenance." To take care of a car properly does
not require that the owner spend an hour a day inspecting the
car. It does mean that periodically the car needs to be checked
to make sure that the operating systems are working appropriately
and that, if they don't seem to be working properly, that they
are checked out promptly.
Warning signs that should alert the patient to
call the doctor are symptoms of any kind that make the patient
wonder if everything is OK. Of course, the most worrisome symptom
is any sense that visual function is worse in any way. These symptoms
would include:
- a sense that it's harder to get around,
an increasing sense of clumsiness
- loss of depth perception
- more difficulty seeing at night
- less ability to distinguish between colors
- haziness of vision that is not corrected
by glasses
- a perception that there are certain areas
in the person's visual field that are getting worse
- pain in the eyes, especially when it's
associated with smoky or misty vision or with rings around lights
- pain or fatigue after close work or when
going into dark places such as restaurants or movie theaters
- achy eyes, that feel as though they have
some pressure in them, especially when such aches occur repeatedly
- colored haloes around single lights such
as street lamps
- a fluctuating sharpness of vision.
It's appropriate for the person to test each eye individually
periodically. This need not be time-consuming or threatening.
One way, for example, is on the first of each month for the person
to check each eye individually to see if there's been a change
in the smallest print that the person can read, and to check each
eye to see if there's a change in the sense of the visual field,
i.e., the awareness of all the things that surround a person.
If one uses the same printed material each time to check vision,
it becomes immediately apparent if the vision is becoming worse.
If one looks at the same general scene, such as at a specific
picture on the far side of the wall, then major changes in the
visual field are easy to appreciate on repeated testing.
There are, of course, a wide variety of other visual symptoms
that indicate that something might be wrong, such as "seeing double"
or marked problems with glare. These symptoms, however, usually
point to concerns other than glaucoma.
It's also important for the person to be vigilant
regarding his or her general health. A person's general health
has a profound effect on his or her glaucoma, and the glaucoma
can have a profound effect on general health. Changes in the person's
sense of well-being, the person's sense of energy, level of general
fatigue, stress, and important events in the individual's life
should be noted and relayed to the physician.
Prepare for Battle or Be Wary of Treatment?
Eyes that have far-advanced damage have demonstrated
that the person's glaucomatous disease is the type that causes
damage. Eyes that don't have much damage have demonstrated that
they have the type of condition in which damage is much less likely
to occur. The person, then, who at a relatively young age is found
to have far-advanced glaucoma damage has to be prepared for a
real battle. On the other hand, the person who's really doing
quite well and isn't showing signs of progressive deterioration
is more likely to be damaged by methods used to prevent further
damage than he or she is likely to be damaged by the glaucomatous
process itself.
Value Your Own Assessment of What You're
Feeling
The person with glaucoma has to realize that the
system of medical care which has come to be considered to be the
best medical care is based on science, and science is based on
unbiased, objective measurements which are analyzed in an unbiased,
objective way. This means that the concerns of patients, which
are never objective, and are always biased, are always considered
with skepticism by the scientist. But in fact every individual
person is unique and different from every other person. The patient
wants a physician to be scientific, objective, and knowledgeable,
but the patient must be prepared to do battle with physicians
who don't appear to value what the patient feels about himself
or herself. For example, when a patient says to the doctor that
he's getting worse, by definition the patient is getting worse.
The doctor may not be able to find manifestations of that deterioration
but that doesn't mean the deterioration isn't occurring. The glaucoma
patient, then, must pay a great deal of attention to his own sense
of well-being and must be prepared to communicate that convincingly
to his or her physician.
Be Ready for Repeated Optic Disc and Visual
Field Assessments
The two most important tests done on the glaucoma
patient are evaluation of the optic disc and visual field. Patients
need to be prepared to have serial, repeated tests of these two
functions. The patient also must be prepared for the huge amount
of variability that exists between testing sessions and must not
conclude that he or she is either getting worse or stable just
on the basis of an apparent change in a photograph or on a visual
field. The determination of whether a test really does represent
a deterioration or an improvement is frequently an extraordinarily
difficult determination and should not be made lightly by either
the physician or the patient.
Be Prepared to Make Trade-Offs
The person who has a serious glaucoma, in which the optic nerve
already has become damaged must realize that he or she is going
to have to make trade-offs. Using drops is a nuisance; the vision
is temporarily blurred, it's not comfortable to have to leave
a meeting to go into the bathroom to use one's drops, it's a nuisance
to make sure that one always has one's drop with one, etc. But
if one has the type of glaucoma that is going to get worse, and
the glaucoma is being controlled with medications, either one
uses the drops or the glaucoma gets worse.
The two most important tests done on the glaucoma patient are
evaluation of the optic disc and visual field. Patients need to
be prepared to have serial, repeated tests of these two functions.
The patient also must be prepared for the huge amount of variability
that exists between testing sessions and must not conclude that
he or she is either getting worse or stable just on the basis
of an apparent change in a photograph or on a visual field. The
determination of whether a test really does represent a deterioration
or an improvement is frequently an extraordinarily difficult determination
and should not be made lightly by either the physician or the
patient.
Similarly, when glaucoma surgery
is done, the eye is not returned to normal. The pressure may be
controlled by the surgery, but the surgery usually substitutes
one problem of less magnitude for the greater problem of losing
vision. It is essential that the patient understand that there
will be such trade-offs and it is the job of the patient and physician
together to decide how to prioritize the problems so that the
patient is most likely to accomplish those things which are of
most importance to the patient.
Glaucoma Patient Support Group Flourishes
Glaucoma Service staff
member Dr. Annette Terebuh (left) with patient Balint Kramlik.
Dr. Terebuh spoke to over 50 patients, friends, and relatives
about alternative treatments for glaucoma at the Glaucoma Patient
Support Group meeting February 8th. SInce December, attendees
have heard Drs. Katz, WIlson, and Spaeth speak on laser surgery,
conventional surgery, and glaucoma and lifestyle, respectively.
The next meetings are scheduled for April 19, May 17, and June
7 -- all Sundays -- from 1:30pm to 3:00pm in the WIlls Eye Hospital
auditorium on the first floor of the Hospital.
First Annual Fund Appeal
Exceeds Goal
By all accounts the first Annual Fund appeal of the Foundation
was a smashing success. Special letters and reports were mailed
out November 5th, with a goal of raising $75,000 for unrestricted
operating support of the Foundation's objectives and programs.
Especially targeted was support for the Glaucoma Service Fellows,
the glaucoma specialists of the future. A total of 748 gifts were
recieved, amounting to $80,273.32. Twenty-two gifts of a $1000
or more were recived with an average gift of $107.
On behalf of all glaucoma
patients everywhere, our deepest thanks.
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