By George L. Spaeth

"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:

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.