Still Learning and Still Confused About Macular Degeneration

For the last 10 years, I’ve tried to find out as much as I can about my dry age-related macular degeneration (AMD). But I’m still confused or unsure on many fronts.

Brief appointments with my retina specialist

At each appointment, I ask my retina specialist (RS) as many questions as I can squeeze in. Sometimes we don’t get to the bottom of the list. Often, we barely get started on the list.

Last time, he popped his head into the room and said, "No change," and popped out again before I could open my mouth. I did have his assistant with me, but I wanted to hear things from my "main man!"

Is it geographic atrophy or not?

A difference in diagnosis has been the most confusing thing for me. My original RS said that I had progressed to geographic atrophy. My new RS said that I was still at the intermediate stage.

My guess is that I am just on the border of intermediate and GA, and this isn’t an exact science.

Questions and uncertainties I still have

Another question that still bothers me is how much zinc to take. My first RS insisted on me taking the AREDS2 formulation with a total of 80 mg of zinc per day. When I started seeing my new RS, he seemed to think that 25 mg of zinc would be enough. Some days I take the 80 mg and other days I take the 25 mg. It feels like an each-way bet.

Blue light. This is another uncertain issue. Is it harmful or not? Research seems to be conflicting. I turn on the blue light filters on my devices, but I haven’t gone to the trouble of having any filtering on my reading glasses. I’m confused about this. I’ll have to work this question up to the top of my list eventually.

The complication of cataracts

What should I do about my cataracts? This is another worry. My first RS said they were nearly ready to be removed. She wanted me to be "measured up" by her technician at the beginning of my next visit. She didn’t discuss what type of lens she recommended and told me nothing about the procedure. She probably would have done that at the next visit, but I thought I was being pushed into this procedure without consultation.

My new RS said there was no need to remove them just yet because they were still quite small. He said to let him know if they cause me problems. I don’t know how to tell if any sight "problems" are from my macular degeneration or my cataracts, so that remains confusing.

The Amsler grid confuses me

My mother’s doctor didn’t want to remove her cataracts until it was absolutely essential because he thought it could make her dry macular degeneration worse. That was about 15 years ago, and I know things have changed since then, but I can still hear his words to my mother.

The Amsler grid confuses me — or, more specifically, when is a change an important change? There are wiggles everywhere on the chart. It’s almost impossible to tell if there are a few more or some have worsened. Is it wiggly enough to go back to the specialist? What about if I was just there a few days ago?

Has my dry AMD changed to wet?

Once, I did decide to do something about what I thought were extra gray spots on the Amsler grid. I went to my optometrist because she is close, available, and free. I knew she could take an optical coherence tomography (OCT) photo, which would show what was happening with my retina.

She did a full examination while I crossed my fingers. I finally worked up the courage to ask her if it had changed to wet macular degeneration. To my surprise, she said that she didn’t know – she couldn’t tell. I was, and still am, confused about why she couldn’t tell. I admire her honesty, though.

Hopefully things will become clearer

So, I made an appointment with my retina specialist. She found a slight progression in one eye, but it wasn’t the eye I was worried about! Most importantly, she said it hadn’t turned to wet, which had been my concern.

I asked her why the optometrist couldn’t tell. She said something about some eye professionals having better equipment than others. I didn’t press this. I took it as a reminder that a retina specialist is a well-trained medical doctor with a lot of experience.

I’ll keep working on my lists, and hopefully things will gradually become clearer, but I’m sure new issues will develop as I go along. It helps to share experiences with members of this community.