"Recurrent Corneal Erosion Syndrome"

It's 8pm -- well after dark, where I live -- and I'm typing this with my sunglasses on.

This is a story about my experience of Recurrent Corneal Erosion Syndrome.. it's a bit long and overly detailed, partly coz it's for my mum (hi Mum!) and partly in case some other poor bugger gets RCES and stumbles across this page. I'll try and put in good headings in so you can skip the bits you don't wanna read.

What It Is

Recurrent Corneal Erosion Syndrome means that a flap of the clear skin on my cornea was torn at some point in the past. Cornea skin can stick back down fairly quickly, but might take 6 or 8 weeks to become fully reconnected. If you're unlucky, then for some reason the flap of skin can attach to your eyelid overnight, and when your eye twitches the flap tears back off again.

The Wikipedia article has more info.

How It Started

About three years ago I woke one night with a bit of pain in my right eye. I'd been routing some MDF earlier that week and I guessed that I'd rubbed a bit of dust into my eye.

The soreness went away after an hour or two, just like it did a month or two later when it happened again, and again the month after that. I'd wake in the early hours, sit up for a hour, then go back to sleep. Sometimes it would still be bugging me the next morning, and sometimes it'd happen a few nights in a row.

I went to a few different GPs at varoius times; a couple had a look at the underside of my eyelid but couldn't see anything, and others guessed that my glasses prescription was wrong, or that I needed antibacterial drops, or whatever. It always went away, so in theory, all treatments (including doing nothing) were equally successful.

Getting Worse

Then, about six months ago, I had a full two days of continuous pain, and resolved to more seriously pursue a solution. I went onto some antibacterial drops and the problem went away again. Same thing happened next time. Then about a month ago it flared up again and I got another prescription of drops and cream.

Unlike doctors before him, this GP now made a confident diagnosis: he told me I had a stye deep under my eyelid, and that was occasionally releasing a bunch of infected gunk. I was pretty happy to get a clear diagnoisis, and the permanent cure, according to that GP, was just to not rub that eye, and the stye would go away.

Brilliant, I thought. I got back on the antibacterial drops and nightly cream, and started to religiously avoid touching my eye. It's harder than you think, especially since the nighttime antibacterial cream sticks in your eyelashes and you can't rub it out in the shower the next morning.

Hurting Hurting Hurting

Four weeks later, and no real improvement. On Wednesday my regular morning scratchiness stuck around for longer that usual, so my daughter and I were late for our Wednesday morning preschool. At work that afternoon my eye hurt continuously, and just after making it home that day, the pain got so bad my eyes just cranked themselves shut.

I managed to force them open that night to jam in some drops and cream, but didn't get any sleep. The only thing stopping me from doing a midnight run to the hospital's emergency room was the current Australian government (whose policies don't include well-funded hospitals).. I expected that I'd be kept waiting around the whole night anyway.

The next morning my wife took me to the first GP we could get an appointment at, which happened to be across the road from the hospital. With pain jamming my eyes shut I was completely blind and M--- had to lead me around. The GP basically just called the hospital's eye clinic and booked us in there, then we borrowed a wheelchair and wheeled over. A hour or so later a nurse gave me a few drops of local anaesthetic and I could open my eyes again.

Another hour later and the opthalmology registrar was looking at my eye with a Big Machine With A Bright Light (BiMWABL, I'll call it), and I was diagnosed with "recurrent erosion syndrome". The registrar taped a pad against my eye, very firmly, gave me an appointment the next day, and sent me home.

Anyway, once the local anaesthetic wore off the terrible blades of pain started whirling in my eye again, but having an actual diagnosis (from an actual expert) was surprisingly buoying. The night went very slowly -- it hurt too much to lie my head back, so I dozed through much of the night sitting in a chair at my kitchen table, slumping forward onto my pillow on the table.

Into Hospital

The next day was Friday and again some local anaesthetic mercifully took away the pain for a few hours, long enough for the opthalmology consultant and registrar to confirm the diagnosis. The treatment for recurrent erosion is some eye drops, and spending several days not moving your eye or eyelid while having a pressure pad on it, so they booked me into a hospital bed.

We waited in the eye clinic about 6 hours. Once the local wore off, opening or moving my good eye moved the bad eye to make me yell with pain, so I was effectively blind the whole time. We moved up to some couches in a ward and waited another hour or two. M--- left to pick our children up from daycare and I was eventually led to a bed and settled in.

Around midnight (I guess) I was moved from that bed to another, which was great, as the first bed was in a room with several other people including one poor guy who I think was recovering from a heart bypass, who had dementia and spent most of the night calling out stuff like "Where am I? Can somebody help me? I feel awful sick.". The new bed was in a room on its own. I kept waiting to get booted in favour of a private patient but it never happened.

Visions and No Sleep

If you're paying any attention to what is around you, it's really hard not to flick your eyes in the direction of some new sound, even when your eyes are shut, so I had to really zone out from the environment to keep my eyes from twitching around.

The pain made it impossible to sleep. If I could keep my eyes still for a while, I could doze off, but the instant I started slipping into REM sleep my eyes would move and the slashing pain would wake me again.

The combination of zoning out, no sight, and no proper sleep led to some really weird visions. I spent long minutes looking at a tree trunk, or watching a big boat pass by. I guess I knew they were hallucinations the whole time. On Saturday M--- dropped in a music player my brother had loaded up for me, and I spent a lot of that evening watching crazy new music clips playing against my eyelids.

Food

I was on a "soft" diet, which is soft veges etc, but I found that chewing at all was moving my eye too much. Changing hospital diets seems a bit like changing the address on your bank account -- you have to ask a few times before it sticks -- but I eventually got changed to a pureed diet. Unfortunately it wasaround the time my eye started getting better, and I wasn't able to change it back before checking out. Oh well.

Getting Better

By Sunday afternoon the slashing neon knives of pain had receded to a rouch scratchiness and occasional spikes. The opthalmologist wheelchaired me down to the eye clinic for another look with his BiMWABL, and said it was looking much better, and I might be getting home the next day.

Another BiMWABL inspection Monday, and I was released.

Home Now

So I'm home now, writing this (I started on Monday, but now it's Tuesday afternoon, because I can only look at the computer screen for short stints).

My right pupil is still gigantic, and it feels a little weird but doesn't hurt at all. I still need sunglasses everywhere and in bright sunlight I can't open my eyes at all, but I expect that to pass over the next couple of days. I'm using regular lubricating eye drops and I guess I'll use them nightly for the rest of my life, but that's a tiny price to pay for avoiding any recurrence of this pain.

So that's it, up til now. Told you it was long and boring :)

Attention, ECHELON

It occured to me that the CIA should look into corneal scraping as a torture. You need a BiMWABL to see it, so the pesky inspectors from the Red Cross or whoever will never know. Just a thought; my ECHELON readers might like to pass it on to their Egyptian friends.