I have to say, I’m pretty sick of being in the eye unit at the hospital. My second experience was better than my first, but after my third.. and fourth, I feel pretty sick to my stomach of the sight of it!
I met with a different optometrist, who sent me for different test after different test. Every every test, I went back to see her and she took one look at my notes and sent me straight back out for a different scan again. That’s when I could tell that they knew something was really wrong. Nothing was discussed with me.
I had to have a visual fields test, which takes a look at which bits of your vision are missing. My eyes felt absolutely exhausted, even the right eye with the okay vision. At one point, I thought the test had finished, but actually I just couldn’t complete the test because my vision wouldn’t allow it.
Three hours into the appointment, I was told I needed come back again for an FFA – a fluorescein angiogram – which I will dedicate an entire blog post to. I ended up also needing an ICG at the same time. I was also scheduled to go back in again a few days later to see a retinal specialist.
The only change I had in my vision in the right eye between the first weekend missing my patches of vision and this follow up appointment was that now I can’t see straight lines with my right eye. I have a very slight distortion and my computer screen looks wavy if I cover my left eye at work. Thankfully, my left eye is managing to ‘even’ this out at the moment. I did ring the hospital about this three days before follow up and they said to wait until I see the retinal specialist – something that caused me massive concern, because I know from working at an eye hospital that this is definitely a sign of something bad going on in the back of your eye.
Going back into the hospital for the fourth time, four and a half weeks after I lost my vision, I was completely defeated. My mood was ridiculously low. I was expecting worst case scenario for two reasons. Firstly, because this is me and, usually, anything that can go wrong will go wrong for me. Secondly, because I still can’t see properly out of my right eye and there have been no changes for the better in my vision. I had pretty much convinced myself that even though I’m only 27, I had developed age related macular degeneration, which is pretty sure is near impossible at my age but there’s always that chance, and that I’d have to have injections in my eyes to maintain the vision that I had left, which is a rational fear(!), and that I would never get my vision back properly in my right eye, which is actually one of the possibilities that the retinal specialist faced with me when I walked into his office two weeks ago.
I have been diagnosed with something called Acute Zonal Occult Outer Retinopathy, or AZOOR for short. It’s a retinal eye disease that is apparently so rare that they don’t know the outcome or if there is any cure. There have been trials of steroids, but nothing has been proven to bring the vision back. Sometimes it will come back by itself, sometimes it doesn’t come back at all. Sometimes it will get better slowly, sometimes it will get worse then better, then worse then better. It’s most common in white women in their thirties. It is most likely to be autoimmune. I’ve been referred on for a test which will assess where abouts on the optic nerve it decides that it doesn’t want to send signals along to the brain.
This is literally all the information I know, because it is so rare.
One of the eye surgeons at work has seen two cases of this ever. Another has seen only one. My favourite surgeon has only seen it in textbooks. I feel completely lost.
I actually laughed when the retinal specialist told need that the condition was really rare and wrote the abbreviation down on a scrap of paper for me. I didn’t know how else to react.
It’s a condition that barely anyone has heard of and there’s no cure. Doesn’t that just sound about right for me?
Part four coming soon! ♡