Thought I'd add an update to my story, for anyone who might have read my previous thread a few months ago. A reminder I'm 27 and was officially diagnosed in about October last year. Thought I might detail the procedure and the afterwards in case anyone is interested or has CXL coming up and wants to know what happens.
Yesterday afternoon I underwent my first of two CXL procedures - on my worse left eye, which was 6/30 vision beforehand (so essentially useless). It was done at the Queen Vic in East Grinstead and as opposed to epi on or off it was a disruption (ie they made cuts and holes in the surface of the cornea, rather than a complete removal).
The procedure itself:
Amazingly I found that I was in good spirits yesterday. I had a family entourage for support, but I was able to have a joke with the staff. Was expecting the nerves to hit, but they never really did.
Anyhow. The procedure was basically just loads and loads of drops going in. After they numbed it and I stopped feeling the drops actually going in it was a doddle.
First they needed to disrupt the epithelium (the bit I was dreading). But not being able to feel anything you just see a blurry device moving across your field of vision for a couple of minutes while the scratch the surface of your eye.
Then is the riboflavin drops - 7/8 at a time all over the cornea (yellowy brown in colour), every few minutes, closing your eyes in between. About 15 minutes overall I guess it was, so plenty of the stuff was put in. I was able to smell them, which wasn't unpleasant, but they said some people taste them too.
Third step is the UV light. In order to keep the eye open they have to clamp it. All I could think of once they told me about the clamp was that scene in A Clockwork Orange with the bombings and Beethoven. This was the worst part of the whole thing, but really it's just discomfort and feels like something is under your eyelid at the top and bottom (which it is), but once in place I couldn't feel it at all. The UV was blue and looked like petals, which changed colour like a kaleidoscope briefly while more drops were put in. You eventually resist the urge to blink and besides that whole section is only about 10 minutes long, so it's over pretty quick.
Then it was bandage contact lens in and I was out of there in the car home.
The afterwards
I'd been warned (and had read) that the pain happens suddenly a few hours later, so I took paracetamol once I got home in anticipation of this. But the real pain never arrived. The best description is that it stung a bit for the rest of the evening, like I'd got shampoo in my eye, but pain isn't the word - on a scale of 1-10 it probably wasn't even a 3.
The main thing was the discomfort, like there was grit in my eye. It was scratchy and easier to have the eye closed, but I had no trouble sleeping and woke up with the stinging gone and only a very slight foreign body feeling. I'm amazed at the lack of pain/discomfort. I know everyone reacts differently and it might well be more painful when they do my good eye, but hopefully this can allay some fears.
It's a bit gooey and sticky, and one of the three lots of eye drops I have to put in tastes a bit nasty, but I'm up and about and there's very little sensitivity to light. Tele is on, laptop is on and I'm comfortable.
As far as what I can see - yesterday it was like I was in fog if I looked out of my left eye. I have to say, though, that it briefly got rid of the bad ghosting I get and, weirdly, I could probably see better through the fog. Today the haze has cleared and it's just blurry - the ghosting is back and the eye is pretty much useless again
but I know it's too early to judge the effects and nor am I expecting to be able to see out of the eye when I couldn't really before, but the brief lack of ghosting was a bit mean I must say.This has ended up quite long, and I know there's lots of accounts of CXL here as it is, but hopefully someone can find it useful.
Happy to answer any questions too while the procedure is fresh in my mind.
Matt
feels great, and my girlfriend passed her test on Monday so she's now on my insurance meaning we can get about at night! However, it was pointed out to me this week that my eyelid's drooping. Googled it and turns out it can be a side effect from the steroids I'm using for the haze, so I've stopped using them for the time being.
I'm guessing it's something like the fluid allowing the images to bypass the haze? It's a bit weird and I probably haven't explained it very well.
