Questions and Answers: Diagnosed With Macular Degeneration

Reaching out to others on the forum page is so helpful for me. Hearing the stories that others share as I go through my own personal journey with myopic degeneration is both reassuring and enlightening and nothing eases a troubled mind better than hearing similar stories from one’s peers.

Hoping to help someone else along their way

It is with this in mind that I compiled a list of questions and answers that might help someone else along their way. It should also be noted that my inspiration for articles has somewhat dipped, and what better way to combat that than sharing with others than to reminisce over my journey thus far. Please note this is all in layman’s terms, medical jargon and terminology is not my strong point.

Noticing changes

Q. When did I notice this drastic change in my vision?

A. My personal journey started two years ago in March of 2019. I was 59 years old.

Q. What changed?

A. As I looked across the room, with one I closed, I noticed a door frame that did not look natural. There was an unnatural wave in its appearance.

Inital check-up

Q. What did I do next?

A. As “luck” would have it, I noticed this oddity on a weekend, so I had to wait until Monday and got into my eye doctor that day.

Q. What was that visit like?

A. That initial visit was like any typical eye exam, questions, eye chart test, glaucoma test and then the actual eye exam. There was also a more intense eye scan, the name of which escapes me.

Q. Were they able to help?

A. After this very thorough exam, the doctor informed me that this was very serious. He strongly advised me to go to a retinal specialist as soon as I could get in. The office also provided the referral and actually set up the appointment for me, much to my relief!

Next steps

Q. What was the next step?

A. I was able to schedule an appointment, but it was about two weeks later. At that time, I was not too concerned. The wavy vision did not really bother me too much and I honestly did not notice the obscuring “blob”.

Specialist appointment details

Q. How did the specialist appointment go?

A. I had finally done some research right before then, and was aware that the situation was much more serious than I had even realized. Retinal and macular issues are nothing to mess around with, and I had read that injections were a typical response to these sorts of problems.

The appointment was pretty intense, initial eye chart testing, pressure testing and the big eye scan that shows what is going inside the eye. After all this, the specialist came in, read the eye exam on the computer scan and this is when it became official.

I was dealing with myopic degeneration due to highly myopic vision. The macula was being stretched beyond its means causing bleeding. Thus, obscuring vision and creating unnatural waves in vision. The protocol for this diagnosis is injections to attempt to stop the bleeds from occurring.

In my naïve way of thinking I thought, “Oh, I’ll get the shot the next time I come in.”

But no, right then and now. This was the beginning my journey into trying to at least halt the progression.

Ongoing treatment plan

Q. So, now what?

A. I return to this specialist every eight weeks, repeat the above mentioned exams and wait with bated breath each time. Waiting to hear yes, another injection or no, not this time. Then it comes to rescheduling again, six weeks out for another appointment. The ultimate goal being a lengthen of time in between exams and hopefully lessen the number of injections needed.

My story, my path

This is my story, my path, not really too exciting and sometimes disappointing. Hearing it broken down into tiny steps takes away some of the overwhelming fear and uncertainty. I hope it helps someone else in the same way.