Not an Exact Science: The Stages of Macular Degeneration

One thing that I’ve learned over the years is that dealing with age-related macular degeneration (AMD) is not an exact science. It’s not exact for those who have AMD, and it’s not exact for our medical professionals.

You might think that, if this is medical science, it should be exact. Well, that’s what I thought at first, but my opinion has now changed based on my own experiences.

Different doctors, different diagnoses

Quite a few of our community members have said they received a different diagnosis from various healthcare professionals. They have visited optometrists, ophthalmologists, or retina specialists and received varying opinions on the state of their eyes.

The first time I realised that this was not an exact science was when I changed medical professionals. I went from seeing an optometrist to seeing an ophthalmologist. The optometrist had told me that I had macular degeneration in one eye and drusen in the other eye. She said the drusen may or may not be the beginning of AMD in the other eye. I didn’t know enough then to ask about the type and size of drusen and their implications.

'Leveling up' my care

Because both of my parents had AMD, I decided this was the time for me to change to the next level up in the ophthalmic community.

I decided to see an ophthalmologist. She diagnosed dry AMD in both eyes as opposed to one eye. She considered the drusen in my second eye to definitely be macular degeneration. I was surprised, disappointed, and confused.

This is where the inexact science seems to come in. It appears to be obvious to all experienced eye professionals when a certain patient definitely doesn't have AMD. It also appears to be obvious to them when another patient definitely does have AMD. Where it appears to be inexact, and open to interpretation, is in the very early stages when particular drusen may or may not be AMD. This is just from my experience.

Uncertainty about the stages of AMD

The inexact science doesn’t apply only to diagnosis. It seems to apply to the definition of progression as well. When is AMD labelled as early or intermediate, and when is it called advanced, or geographic atrophy (GA)?

My ophthalmologist eventually said (after approximately 9 years), that I had progressed to the GA stage. She said I was lucky that my blind spot wasn’t right in the middle of my line of sight.

The lines between stages can seem blurred

After that diagnosis of GA, I decided to find the best retina specialist I could. There was no real problem with my ophthalmologist, but I needed to feel that I was getting the best advice possible. Perhaps I just needed to feel that I was "doing something."

My new retina specialist (after a full examination) said I was still at the intermediate stage. This surprised me. It was one of the strongest indicators to me that there wasn’t an exact delineation between stages. Macular degeneration is a progressive disease where a person may eventually slip over the line from one stage to another, (or, with a bit of luck, stay at the early stage, as many do), but the line is blurred (pardon the pun) from my experience. And perhaps it is even open to interpretation.

What matters is having treatments for every stage

So, do these differing opinions worry me? No, they don’t really. I can tell how my eyes are functioning from day to day. I know there is a gradual deterioration. My checks of the Amsler grid show me this. My retina specialist will tell me how he thinks I am doing every 6 months.

I have come to terms with the fact that marking out the various stages of early, intermediate, or advanced is not an exact science. It’s not really the label that matters.

What matters is that we have access to whatever treatment is available at the time, and that science gets on with finding more treatments, and possibly a cure, for our macular degeneration — whatever stage we are at.