A Second Opinion on My Macular Degeneration
"Why am I looking for another retinal specialist when I have a perfectly good one already?" I asked myself this question recently on a bus into the city. It was a bit late to be thinking like this because I was already on my way to my first appointment with a new specialist.
What I had
My current retinal specialist is a 15-minute trip by car, door-to-door. Why am I putting myself through this excursion into the unknown?
I have dry age-related macular degeneration (AMD), and I know there is no treatment at the moment, except the very new Pegcetacoplan injection, which I don’t qualify for yet. So why am I doing this? On the trip into the city, I tried to analyze what I was hoping for.
I decided I wanted the following:
- More detailed information about the condition of my eyes after 8 years with AMD.
- A second opinion on the removal of my cataracts. My current doctor thinks they should be attended to relatively soon. I’m uncertain about having this operation and I need some reassurance.
- Up-to-date details of any new treatments, from a doctor at the top of their field.
- To feel that I had done the most I could to find the best doctor available. I didn’t want to feel I had just stayed with the current one out of convenience.
Did I get what I wanted? Well...yes!
What I got from the new doctor was:
- A slightly different diagnosis – the new doctor says neither of my eyes has progressed to the advanced stage of geographic atrophy (GA), despite my current doctor saying one eye has GA. (I realize there is probably a fine line between the stages).
- A reading of the optical coherence tomography scan (OCT) which says I definitely have the genetic form of AMD. There were a few other new terms on his report that I haven’t been able to Google yet (there’s a tiny bit of denial going on!).
- The emerging treatment, Pegcetacoplan, was mentioned, but he said, as did my other doctor, that I wasn’t at that stage yet.
- That there is no urgency to remove my cataracts. He mentioned that he would do the operation himself when the time came. He says it is best to have a doctor experienced in both AMD and cataracts to do the operation.
My takeaways
When I asked about AREDS2 and saffron supplements, he said he had been involved in trials with saffron. He nodded for me to continue taking it.
I was pleased to hear that his clinic was involved in various clinical trials and he is consulted by the Macular Disease Foundation of Australia.
I concluded that this doctor “knows his stuff.” And I like him. He understood I was seeking a second opinion, but I let him know that I was also considering changing to him.
A small obstacle
The only drawback I see with the new doctor is the increased traveling. This could get even more difficult if I need injections down the track.
Then I remembered a comment by one of our community members about driving down from icy, mountainous regions of Alaska to Anchorage to have her shots. She left home at something like 8 am in the morning and got back home at 2 am the following morning.
“What are you complaining about Wendy?” I thought. “Get on with it and make another appointment!” And I did. I’ll be seeing the new doctor again in 6 months.
Perhaps I can enjoy a coffee or a wine down by the harbor after I see him next.
Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).
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