by Dan Roberts
Updated July 2013
One of the most common problems encountered by people who are first diagnosed with macular degeneration is what to ask the doctor. The news usually takes us by surprise, and we may have never even heard of the disease before.
To compound our confusion, many doctors do not have the time to educate us about all of the aspects of our condition. It is, therefore, our responsibility to learn as much as possible so that we can ask specific questions.
Good doctors are busy. They cannot afford to spend an inordinate amount of time with us, but they will take the time to answer our questions if we are well-prepared and concise. That is the purpose of this page. It will first explain the basics to you (be sure to bookmark this page before following the links), and then you can print it out and take it to your next appointment.
Do not expect your doctor to provide a great deal of emotional support. Instead, expect a courteous professional who knows how to take care of your physical needs and who is familiar enough with the resources to direct you to other information which you may require.
Above all, no matter what answers you hear, remain positive. Most things will never be as good as you hope, but neither will most things be as bad you think.
1. Do I have wet or dry macular degeneration?
Wet macular degeneration is caused by the formation of new blood vessels (neovascularization) which leak into the layers of the retina, causing separation of the membranes and eventual degeneration of the light-sensing cells of the macula (the center of vision). Dry macular degeneration is caused by a withering away of the light-sensing cells of the retina for no apparant reason other than age, and this can be influenced by a combination of factors, including genetics, insufficient nutrition, exposure to ultraviolet rays, and smoking. For more information, read “What is Macular Degeneration?” on this site.
2. Are drusen present in my retinas?
Drusen are small deposits of debris in Bruch’s membrane, which would have been removed by young, healthy retinal cells. For more information, see “Drusen Lasering” on this site.
3. If I have drusen, are they “hard” or “soft?”
“Soft” drusen are more likely than “hard” drusen to lead to macular degeneration.
4. What tests did you use to confirm my diagnosis?
The most common diagnostic tests are an acuity exam (Snellen or other chart), an internal ocular examination and an angiogram, which involves flash photos of the retina through the patient’s dilated pupil. Either fluorescein or indocyanine green dye is injected into a vein prior to the photos. More information may be read in the article, “Flourescein and Indocyanine Angiograms,” on this site. Another valuable diagnostic tool now in common use is ocular coherence tomography (OCT), which provides a computerized side view of the retinal layers.
5. Is laser surgery an option for me?
Lasers are used to treat only the wet form of macular degeneration. There are currently two proven laser treatments. One closes the leaking vessel with an intense, finely-focused beam, leaving a blind spot in the targeted area. This treatment is called photocoagulation laser therapy.
The other treatment is called photodynamic therapy (PDT). It uses a low-power laser beam to activate a light-sensitive drug which has been injected into the patient’s bloodstream. This dye, called Visudyne or Verteporfin, stops the blood vessel’s growth, and the treatment causes no damage to surrounding tissue.
More information about these treatments may be found on this site.
6. Am I a candidate for Macugen, Lucentis, Avastin, or Eylea drug therapy?
These are antiangiogenic drugs now available for patients with wet macular degeneration. Read about them and comparable experimental drugs in the article, “Antiangiogenic Drugs Are Stopping Neovascularization in Wet Macular Degeneration.”
7. Am I a candidate for retinal translocation surgery or submacular surgery?
Both are still experimental, but have shown some positive results in human subjects. More information on each may be found on this site.
8. Should I consider alternative therapies and/or alternative medicine?
Any therapy or medicine which has not been put through the scientific process of approved clinical studies is questionable. If such an approach relies principally upon anecdotal and empirical evidence, and if it does not seem to be based upon sound scientific principles, then it should be viewed with a healthy amount of skepticism.
9. Will nutritional supplements help my condition?
Several supplements have been tested and shown to have positive benefits. One is a multi-vitamin formula recommended by the Age-Related Eye Disease Study (see “Clinical Trial Finds Antioxidants and Zinc Beneficial in Reducing Risk of Severe AMD”) and the others are lutein and zeaxanthin (see “Lutein And Zeaxanthin May Offer Protection Against MD”). Your doctor will tell you if these dietary regimens will be beneficial to you.
10. Where can I go locally to receive assistance in the use of low-vision devices?
Your doctor should be able to put you in touch with recommended rehabilitation centers in your area. You may also find information about low-vision devices, vision centers, and state agencies in the resource section of this site.
11. How often should I be evaluated?
Normally, the doctor will want to see you at least once a year, unless noticeable changes occur in your vision. Continue to monitor your vision closely, and be sure to call if that happens.
Questions Your Doctor Cannot Answer
Will I lose all of my central vision?
Each person is different as to how long it takes for the cells to degenerate. Macular degeneration is a progressive disease, but stabilization for months or years can drastically slow down its progression. Therefore, complete loss of central vision could take anywhere from months (in some wet macular degeneration cases with no treatment) to years, or degeneration may never reach its full potential if your life span is shorter than the course of the disease.
When are they going to find a cure?
There is a great deal of research going on in many areas, and there is reason to hope for a cure within the next decade. Any more accurate prediction than that is purely guesswork. The best you can do right now is to practice good nutritional habits, avoid pollution and smoking, protect your eyes from ultraviolet rays, and stay informed about possible treatments. Then, when the cure does come, you will have done the best you can to take advantage of it.