UK Keratoconus Self-Help and Support Association

Hi all,

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

Well I'm glad it went well for you buddy, keep us updated... when does the other eye get done?

Thanks mate, I will do.

Second one I'll go back on the waiting list if they ok it at Wednesday's follow-up app. So I would imagine a similar time frame to being on the list before, 2-3 months.

Has there been any improvement for you yet?

Overall, not really... but every now and then I think, is that slightly better than before? I had a positive and a negative this week. I started driving again 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.

The most frustrating thing for me at the moment is a strange phenomenon that went I put the steroids in (or probably any fluid) and it rests on my eye, if I then blink and look at stuff whilst my head is facing downwards, for a split second every blink my world becomes clear again. Like, really properly amazing vision... this tells me that behind the damn haze, my vision is good, I just need it to clear! 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.

Matt, thank you for sharing your experience. Glad it went well and please keep us posted.

Cripps, that's interesting. I'm a layman, of course, but if your vision clears with drops it doesn't sound like the hazing is a fundamental condition of your cornea. Did you bring it up with your doctor? I'm using a French lubricating drops called Cationorm and they're amazing. Can't recommend them enough.

p.s. The reason I mention the drops is because I too experience this amazing laser sharp vision in the minute or two after I apply the Cationorm.

That's really interesting that your vision gets better very briefly after drops (both of you in fact). It's also depressing, much like when they test my left eye through pinholes and I get 6/7.5, but they take them off and it's 6/30 again.

I can only assume the brief clear sight is something to do with the fluid reducing the amount of peripheral light that's taken in by the cornea, but I'm probably way off base. Also that wouldn't explain why the haze clears of course.

But that's good news RE the driving. I remember reading a post of yours a few months ago that you said you couldn't cross the road by yourself, so as an outsider there must have been slow progress in that time.

Vision today in the left eye is back to absolutely shocking. As a fun test I put on my old glasses (years old prescription) - before the surgery I think they slightly improved vision, in that they made the edges clearer and the image bolder of what I was looking at, but now they make things worse. Obviously I can't learn anything at this early stage, but it's obvious something is happening in there.

Also, the drops - yuck

adam1979 wrote:Matt, thank you for sharing your experience. Glad it went well and please keep us posted.

Cripps, that's interesting. I'm a layman, of course, but if your vision clears with drops it doesn't sound like the hazing is a fundamental condition of your cornea. Did you bring it up with your doctor? I'm using a French lubricating drops called Cationorm and they're amazing. Can't recommend them enough.

I wouldn't say the drops are actually helping me all that much. Some patients I read about online found their haze cleared within 3 months... but here I am 4 months later and no (or very, very little) improvement. My consultant said I would most likely stop using them after April anyway, so I've just decided to stop a little early due to the drooping eyelid.

MattD87 wrote:
But that's good news RE the driving. I remember reading a post of yours a few months ago that you said you couldn't cross the road by yourself, so as an outsider there must have been slow progress in that time.

Unfortunately that's not really the reason. When I posted that it was before I got my new prescription which helped things in my other eye no end... with my glasses that still have old prescriptions in, I still struggle to cross the road.

I'm glad it went well for you man, I had mine done at the Queen Vic the week before on the 14th and have to say it was an unpleasant experience,It was perfomed on my left eye which is my worst and already has an intac fitted.
They administed anesthetic drops and proceeded with the eye scraping, I had told the Dr. that my eye's we're sensitive and I had little control over my eyelid's flinching, he attempted the scrape but eventually went and used a clip to hold my eye open.
After this the Riboflavin drops we're administered, unfortunately the anesthetic drops seemed to be relatively inaffective and would wear off only minutes after being put in and due the nurses attending to several patient's at once I would be left and would experience intense pain until they returned and administered more drops, when the Opthamologist looked in my eye there was no Riboflavin in there so they had to do it all again.
After the second attempt (and a much more patient nurse) I was finally ready for the cooking stage, this was actually OK and the rest of the procedure went fine.
The Opthalmologist advised me to take paracetamol/Ibruprofen as it could get painful which I did and went home (Eastbourne so about an hour) my parents dropped me off at my flat and left me to it armed with a few boxes of Ibruprofen/Paracetamol and after about an hour I was in agony and my eye watered profusely causing the bandage lens to fall out.
It was so bad I called my dad (suprisingly difficult to read) who drove me down to the local hospital where I spoke with their Opthalmologist who informed me the procedure could be as painful as child birth!!! she eventually prescribed me some codiene I took some and went back to my parent's where I fell asleep.
The next day was fine I just kept taking the codeine, occasionally my eyelids would stick closed whilst sleeping and I'd get a build up of fluid which whould squirt out which was quite an experience other than that no pain just a similar experience from what I've read others have had.

I dont think anything went wrong specifically and on the follow up the Opthalmologist seemed happy with it, I do occasionally get a slight tingle, I will however describe the problems I had this time when I get the Right eye done so that hopefully it'll go smoother.

Sorry to hear that! Everyone's different... my first was fine really, I got a takeaway pizza and enjoyed my night! No issues to speak of really. My second eye however, was horrendous and I was in extreme pain for hours on end. Just glad I don't have a third eye lol.