Following Up with the Doctor on Vision Changes

Macular degeneration may be stealing my vision, but it can't have my joy!

Myopic macular degeneration patient and advocate

At the beginning of November, I started having some pretty scary vision changes. I was diagnosed with myopic macular degeneration thirteen years ago and have been a patient advocate, author, and moderator for MacularDegenration.net for a year and a half now... so I’m well aware of which visual changes shouldn’t be ignored.

A new symptom

I woke up on a Monday morning with flashing lights in my right eye. This is my 'bad eye' because even though my prescription in this eye is a little lower than in my left, this is my eye with a scotoma.

I took off work, which is really difficult currently as we are in a pandemic and I’m a third-grade teacher by day. It was more important for me to rush in to see my retina specialist this time.

The youngest patient in the waiting room

My boyfriend and I sat outside of the office in the hallway waiting for my appointment so we could social distance from the rest of the patients. They called my name and I popped up to go into the office waiting room where the nurse was waiting with a shocked look on her face. “Andrea?” she inquired quizzically. As I replied that I was, indeed, Andrea, she responded with “You’re not the typical age of patients we see.”

I get this type of response a lot when I’m at my retina specialist’s office so I'm used to it by now, but it always still stings a little bit. “I KNOW!” I want to scream out of frustration, not at the nurse, but at this stupid disease that attacks my eyes about 40 years sooner than most. I just smile and nod instead.

The pain of getting checked

My retina specialist kindly fit me in and I’m grateful for that because I know these doctors are extremely busy. I was in and out in an hour and a half too, which has to be some kind of a record! He dilated my eyes, I did the ‘look up, look up and left, look up and right..." dance with him, then he suction cupped a magnifying glass onto my eye and looked all the way into my retina with his headlamp.

This is the part that pains me, physically, the most. Magnifying glasses, bright lights, and dilated eyes do not belong together. But, it’s an important part of the process, so I sit there willingly and just try to breathe through it as involuntary tears pour down my face.

For me, the emotional aspect of this disease is far more painful than anything they can do to me physically.

All clear? Or not?

I got the all clear from my retina specialist that nothing was torn or ‘wrong’. But over the course of the next few weeks, my symptoms started to morph. My flashing lights turned into HUGE, dark floaters, and then I noticed some color changes to my vision, and some difficulty seeing out of my periphery. Interesting, I know… macular degeneration is a central vision disease.

So, I called my opthamologist and got an appointment to see her partner before the Thanksgiving holiday as she was out for the rest of the month. My soul just needed another set of professional eyes on mine to help ease my mind into understanding that I was, in fact, in the ‘all clear’.

My second checkup

Into the doctor's office we went again. This time, I was lucky enough to spend almost an hour with this doctor. Though the testing was still difficult and slightly painful, he took very good care of me. I was just thankful to be in his office that day.

He gave me a field vision test to check my peripheral vision, as well as updated all of the pictures of the deepest parts of both of my eyes. He took time to ask me specific questions about my vision changes, so when he told me that there wasn’t anything emergent happening in my eye, it was easier to take in.

Good news or bad news?

This doesn’t mean that my new vision changes are magically cured. In fact, it means that they can’t be. That isn’t the easiest news to take. But, my doctor and I believe that these new vision issues are due to me ‘looking through’ a giant floater. I’ll take any ‘good -ish' news I can get at this point.

The importance of kind doctors

It bears mentioning here the amount of kindness both of these incredible doctors showed me by fitting me into their always extremely tight schedules. The second doctor I saw isn't even my doctor and he spent as much time with me as I needed. Doctor-Patient relationships are so important for this reason. I feel so much more at ease knowing that when something does arise, I can get in to see the people that can help me.

It's still up for debate on whether or not seeing through a giant floater is good news or bad news. But, at least now I know the culprit of my recent vision changes. Onward with my joy.

Better safe than sorry,
Andrea Junge