Glaucoma-Patient to Patient--A Coping Guide for You and Your Family

Editorial Reviews. About the Author. Edith Marks, author of the widely popular and ground-breaking book, Coping With Glaucoma, uses this newest release to.
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If your angle is open, any glaucoma that is identified will be considered open-angle glaucoma. During the exam, the gonioscope is placed directly on the surface of your eye like a big contact lens. The examiner uses a slit-lamp biomicroscope to view the angle. Because an anesthetic drop is administered before the test, gonioscopy is usually painless, although some people experience some discomfort.

New technologies for examining the angle are becoming available. Anterior segment optical coherence tomography ASOCT , which requires no anesthesia and is painless, records an image of the cross-section of the angle using a dim light reflected from the eye. In most cases, an examiner can determine whether angle closure is likely, although there are instances where the results are inconclusive.

Not all eye examinations include gonioscopy, but if you are considered a glaucoma suspect, you can request that your angles be examined. If there aren't any signs or suspicion of glaucoma, the test may be considered unnecessary, but you can still ask your examiner to perform the test in order to determine if you have an anatomically narrow angle, which would put you at greater risk and indicate that periodic gonioscopy is advisable.

Your doctor will want to know if you have risk factors that increase the likelihood of your developing glaucoma. Clinicians often assume that the tests they perform provide all the information they need about your vision. This is not necessarily true! Jeffrey Liebman, a well-known glaucoma specialist, suggests that doctors may need a high priority checklist to ensure a comprehensive exam. Loss of contrast sensitivity is a common effect of glaucoma affecting central vision.

If you do not have any observable optic nerve damage and do not have elevated IOP or several risk factors, you may be considered free of glaucoma and not in need of ongoing observation. A positive diagnosis indicates the doctor believes that your present condition will worsen without treatment. Something to keep in mind is that with glaucoma, observable functional loss often follows structural loss. Although criteria for diagnosing glaucoma usually include observable and measurable structural and functional damage, optic disc and retinal nerve fiber layer structural changes are often observed before visual field defects are picked up by standard perimetry.

Not only do structural changes appear to precede functional changes, but it is now possible with digital imaging to detect structural retinal nerve fiber layer damage before functional visual field impairment can be measured. Nerve fiber scanning test in glaucoma asymmetry analysis. Often the results of testing are not clear-cut.

Doctors use different protocols for the monitoring and treatment of open-angle glaucoma suspects versus closed- or narrow-angle suspects. If gonioscopy reveals that your angles obscure a view of the trabecular meshwork completely or as much as 50 percent but you do not have observable structural and functional damage, you are considered an angle closure suspect. When diagnosed early enough, angle-closure glaucoma can often be cured via a procedure called a laser iridotomy.

In this discussion of being a glaucoma suspect we are assuming your angle is open, which would predict a non-surgical approach to the early stages of treatment. If examination does not reveal structural and functional damage, what might make a doctor identify you as a glaucoma suspect? There aren't any hard and fast rules, although attempts are being made to quantify risk. If you have several risk factors your doctor may want to monitor you closely as a glaucoma suspect.

There was a time when eye pressure was a primary component of the definition of glaucoma. High IOP is not glaucoma, but it is a well-documented contributing factor. If your IOP is above 21 mmHg— the high end of the average range —you may have what is now referred to as ocular hypertension and should be treated or monitored regularly.

Millions of Americans are hypertensive. Only a very small percentage of those will develop glaucoma. This section is not intended to provide medical or treatment advice, nor is it intended to recommend a given course of treatment. Treatment decisions should only be made after consultation with your doctors. If you are identified as a glaucoma suspect, your doctor will discuss with you whether to begin treatment to minimize the risk of glaucoma developing. Why not begin treatment immediately? Glaucoma medications are expensive to purchase, time-consuming to administer, and only effective if used daily, as prescribed.

Why not wait until a more definitive diagnosis is possible? By the time glaucoma is apparent to an examiner, the disease has usually been active for some time and the damage done is not reversible. Whether to wait or to begin treatment ultimately comes down to evaluating as best as one can the risk of not beginning treatment, which is something your doctor can help you determine. With that information you can best decide how to proceed. If you are not offered a chance to discuss your diagnosis and treatment plan, ask to do so.

These are decisions that can have life-long implications. Often doctors are simply rushed and need to be made aware of your need to discuss your vision, your prognosis, and decisions about treatment. If you have been identified as a glaucoma suspect, make sure you first understand your test results.

You might also ask the following questions:. If you have been identified as having glaucoma or a high enough risk to begin treatment, you might ask:. Unfortunately, at this time there is no single, definitive test for glaucoma. In order to make a diagnostic decision, your doctor must evaluate many factors in order to decide if you have glaucoma or are a glaucoma suspect. The more you understand glaucoma, the more empowered you will be to take an active role in the diagnosis.

Many patients are unhappy with their experiences in treatment for glaucoma, and may suffer silently. You do not need to accept an unsatisfactory situation. First, remember that you choose your doctor. You can make appointments with several doctors and get a feel for different styles and approaches.

How you feel about your doctor is important. If you do not feel comfortable with or trust your doctor, you may well be more likely to skip appointments and to not adhere to your medication regimen. Does your doctor ask if you have questions? If not, do you simply remain frustrated? You can try to shape the interaction.

Patient's Guide to Living with Glaucoma

You can ask directly: Can you spend some time during this appointment answering them? Does your doctor explain the tests he or she performs? If not, you can ask: How do they compare with the last tests? How have things changed from the previous images? You have the right to have copies of your medical records. Few patients ask for their own copies. You can keep a file of your records and test results.

They will surely raise questions for you to ask. And when your doctor knows you are keeping and looking at your records she may be more inclined to share information with you. Glaucoma appointments are stressful. They happen quickly, and most patients are nervous. Dealing with a disease that can take your vision can be frightening. Write down your questions beforehand. If vision loss makes writing difficult for you, here are some alternative ways to record questions and answers.

Take notes or bring along a friend or partner who can record the session, which will free you to listen attentively. Write down any instructions your doctor gives you. This is not simply a matter of feeling good. Glaucoma is a chronic disease, so you may be with your doctor for many years. If you have glaucoma or are a glaucoma suspect who has elected to pursue treatment, you begin treatment with an ophthalmologist to treat your eye disorder and to minimize impairment to your vision. Your doctor's focus is on changes to the anatomical and structural integrity of the eye the drainage system, the optic nerve, and the retinal ganglion cells and on measuring how structural changes affect the health of the organ e.

While you, the patient, certainly care deeply about these factors, you are also concerned with how you are seeing and how your vision is changing—in other words, your functional vision.

What is Glaucoma?

With limited time to spend with each patient, the doctor's focus is on visual health. But measuring the health of your eyes does not necessarily tell you how you are functioning. The information in this section can help you understand changes to your vision and guide you toward help for learning to adapt to your vision loss. Functional vision is the use of vision for particular purposes. Functional visual skills are required to carry out everyday activities. The vision tests that are part of your glaucoma treatment may not necessarily tell that much about how you use your vision.

You may measure poorly on visual field testing yet be doing fine with your daily activities. Or you may do well reading the letter chart and your visual field tests may show only moderate problems with peripheral vision, yet you experience significant visual limitations in daily living.

Vision tests, while essential to the treatment of your glaucoma, may not reflect your actual experience of seeing. Functional vision is an experience that cannot be entirely measured by quantitative tests. Evaluating your experience seeing can tell you a lot about your vision. Consider the following questions. Vision loss from glaucoma is commonly presented as a gradual reduction in the peripheral field of vision, described and presented visually as increased tunnel vision:.

While narrowing of peripheral or side vision is indeed a primary characteristic of glaucoma, there are other, less frequently discussed ways glaucoma affects vision, including:. Vision distortion from glaucoma blind spots. Contrast sensitivity is the ability of your visual system to distinguish between an object and its background.

Try picturing black beans on a white plate high contrast and white rice on a white plate low contrast. Visual acuity tests present you with black letters on a white background, while in daily life most of what we see is viewed under moderate- or low-contrast conditions. If you have low contrast sensitivity, objects must have higher than normal contrast just to be visible to you. Low contrast objects and objects in low lighting situations will be difficult for you to detect.


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Stairs with high contrast L and stairs with low contrast R. It may be that in a busy, rushed practice there is no time for a test that does not have diagnostic significance. There are tests for contrast sensitivity. Many are similar to the visual acuity test but the letters are presented in increasingly lower contrast:. The Pelli Robson contrast sensitivity test.

The design of a new letter chart for measuring contrast sensitivity. Clinical Vision Sciences, 2 3: Manufactured by Precision Vision. If you are concerned that your contrast sensitivity has become diminished, ask your doctor to give you a contrast sensitivity test. As an added bonus, research shows that contrast sensitivity loss from glaucomatous eye damage can be seen even before acuity loss, cupping, or field loss presents. The tunnel model of vision loss from glaucoma is also misleading because it does not represent the more common experience of blind spots or areas of distortion that those with glaucoma often experience.

These areas of defect are known as scotomas. Studies have found that patients with glaucoma report either blurring or missing areas in their peripheral fields more often than they report tunneling of their vision. A depiction of a scotoma obscuring part of a visual field. National Eye Institute image digitally altered by the author. A scotoma may be an area of darkness—of no vision—but it may also be an area of brightness or distortion.

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While scotomas show up clearly in visual field tests, where each eye is tested separately and without movement, they are often difficult to identify in real life for two reasons:. How do you learn if you might have a scotoma? Ask to see your visual field tests, and ask for any detected scotomas to be pointed out. Why might it help to know about your scotomas? Certainly seeing that glaucoma has resulted in blind spots or visual defects can be upsetting, but knowing where the defects are can help you adapt so that you can optimize your vision. It is easy to assume that if you read the letters on the letter chart at a reasonable visual acuity the rest of the visual system must be functioning equally well.

In terms of functional vision, this is not at all necessarily true. Although you will likely be tested for acuity at each appointment, note the following:.

Compassionate Communication

The term "low vision" refers to a visual impairment not correctable by standard glasses, contact lenses, medicine, or surgery, that interferes with a person's ability to perform everyday activities such as reading, driving, shopping, cooking, or watching TV. Low vision manifests in many ways. You may have severely reduced visual acuity, a significantly obstructed field of vision, or reduced contrast sensitivity—or all three!

You may not actually know you have low vision! People often struggle in their daily life without understanding why. To make best use of your vision, you need to become aware of several factors, including the following:. Do you have trouble reading, driving, or walking in dimly lit spaces or streets? Loss of contrast sensitivity can make these tasks challenging. Glare—light coming into your eye from the top or side—can also make seeing difficult.

Contrast sensitivity and glare tests can be performed as part of your low vision assessment. Do you have difficulty driving? If you have glaucoma, can you realistically assess your driving? Even when treatment cannot reverse vision loss, functional vision—how you function in the world—may be improved with training and with vision-enhancing devices.

You can learn to make better use of your vision and you can function efficiently with only small amounts of visual information. The first step in adapting to the vision loss you are experiencing from glaucoma is to make an appointment with a low vision specialist who will help you recognize and accept the ways glaucoma has affected your vision and help you learn new strategies for functioning independently. Visit VisionAware to learn more about low vision exams and living with vision loss.

You may also want to try our Getting Started Kit for more tips and ideas. Researchers are pursuing many new avenues to investigate the underlying causes of glaucoma. As researchers learn more about the disease process involved with glaucoma, new diagnostic and treatment processes are being developed and studied.

You may want to read about existing treatments. But exciting new areas of investigation include the following:. New techniques for seeing and creating images of the optic nerve and retinal nerve fiber layer are continually evolving, and currently include: Confocal scanning microscopy, Fourier-Domain optical coherence tomography, multifocal visual-evoked potentials, microperimetry, and retinal functional imaging, along with Spectralis analysis and improving imaging of retinal ganglion cells. Nerve fiber layer analysis in glaucoma.

Controlling the progression of glaucoma has until recently focused on the lowering of IOP. Because glaucoma does progress in some individuals despite good control of pressure , research into medicines that strengthen the eye against the effects of high pressure neuroprotective agents is one of the most promising areas of investigation.

Neuroprotection as a strategy for glaucoma treatment aims to employ agents that will prevent or delay retinal ganglion cell RGC death and will save and promote regeneration of already compromised RGCs. Neuroprotection research seeks to identify agents that can:. Development and evaluation of new medicines that lower intraocular pressure or increase fluid outflow is ongoing. Until recently, surgery was considered as a last resort for open-angle glaucoma treatment, only after medication failed to control IOP.

The complications associated with trabeculectomy, the surgical procedure used to treat open-angle glaucoma, kept it from being a popular first choice. With the advent of new surgical techniques and technology, this balance may well be changing. New surgical interventions now available or under investigation include:. Other new surgical interventions include canaloplasty to widen the Schlemm's canal; the gold shunt implant; ologen gel, a microtechnology-based, biodegradable membrane; and minimally invasive Trabectome surgery.

By comparing the genetic makeup—or genome—of people who have glaucoma to people who are free from glaucoma, researchers are attempting to identify the genetic differences that put people at risk for glaucoma. The effort is complicated by the fact that glaucoma seems to be influenced by many small genetic differences rather than a single gene.

Patient's Guide to Living with Glaucoma - VisionAware

Five regions of the genome have been found to be strongly associated with open-angle glaucoma, with certain genes associated with eye pressure and others associated with the optic nerve. At least two of the genes linked to higher eye pressure are thought to affect the trabecular network and hence fluid flow. In the candidate gene approach, researchers make a list of candidate genes that might cause glaucoma if their normal function were altered and then test a large group of unrelated glaucoma patients for defects in these candidate genes. In the linkage analysis approach to genetic causes, glaucoma-causing genes are identified by studying large families that have several members with glaucoma.

Those segments of the DNA always passed down through the family along with glaucoma are located within linked regions of DNA. Researchers are "investigating the presence of modifier genes in various glaucomas and correlating these with the age of onset and severity of the glaucoma. Because glaucoma continues to progress in some patients who have successfully lowered their pressure, other factors in disease progression are being explored. Research has shown that glaucomatous nerve damage in the eye may spread to major visual centers of the brain a process well known in other neurodegenerative diseases.

When the damage spreads, nerve cells in the brain related to visual function begin to shrink and die. Neuroprotection has the potential to prevent the degeneration of those nerve cells both in the eye and the brain itself. A study showed that memantine protects neurons from shrinkage in the vision centers of the brain in experimental glaucoma. Clinical trials are underway to determine if glaucoma patients will benefit. Recent research suggests that cells in the retina other than RGCs are equally affected or equally contribute to the rate of decline of the ganglion cells.

This suggests looking at the occurrence of neurodegeneration in a new light, with research underway to identify connections in the brain and how these connections may be strengthened. Many researchers no longer view glaucoma as an eye disease but rather a neurologic disorder that causes nerve cells to degenerate and die, much like in Parkinson's and Alzheimer's diseases.

Focusing on the mechanisms that cause the degeneration of RGCs—which connect the eye to the brain through the optic nerve—researchers are seeking ways to protect, enhance, and even regenerate ganglion cells. Many treatments that target retinal ganglion cells are now in clinical trials , including:. Stem cell therapy trials are also currently in the planning stages.

Getting Checked Out

In-depth exploration of RGCs also has the potential to identify what factors, such as genetics, make some people more vulnerable to glaucoma. Not only is the same pathway prevalent in glaucoma, but it is activated very early in the progression of the disease. Researchers are exploring whether the same molecular pathway leads to degeneration in multiple neurodegenerative diseases. Some researchers are proposing that glaucoma is not an eye disease at all but rather a brain disease , with the brain, not the eye , controlling the cellular process that results in glaucoma.

Glaucoma represents a range of eye diseases that have the potential to cause significant loss of vision if left untreated. Because glaucoma is not a single disease with a single test for determining its presence, it is important to be proactive in educating yourself about how glaucoma is diagnosed and what treatment options are available. I hope this guide helps you in this process.

I encourage you to stay up-to-date with the most current glaucoma research by reading the VisionAware blog and the other online resources we have listed for you in the Resources section, and to check back for updates to this guide. Glaucoma Facts National Eye Institute. The Glaucoma Foundation A not-for-profit organization dedicated to vital research to find cures for glaucoma. I am a Patient International Glaucoma Association. What Are the Symptoms of Glaucoma? Glaucoma the complete guide: The definitive guide to managing your condition and saving your sight.

Glaucoma patient to patient: A coping guide for you and your family. What every patient should know VisionAware helps adults who are losing their sight continue to live full and independent lives by providing timely information, step-by-step daily living techniques, a directory of national and local services, and a supportive online community. Learn how AFB designs its family of websites for accessibility! If we say Pre-order it means that your item will be dispatched to you on the day it's released and arrive with the time span of the shipping plan you chose.

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