UK Keratoconus Self-Help and Support Association

Hi guys, been a while as the link to this new forum is still broken on the home page and I just happened to stumble upon it on a Google link! Needs looking at there... anyway, thought I'd give a little update to my CXL experiences.

Right eye: My worse eye and the faster progressing of the two. I got CXL performed on this eye back in summer '14 and due to an order muck up, I didn't actually get my new prescription of contacts until just a few weeks ago. The procedure itself went perfectly; I was back to work after one week, and driving again after two. My new contact is simply... incredible. It's like seeing in high definition for the first time! I haven't got the exact figure on me at the moment but my astigmatism has almost been reduced to half of what it was! I really can't explain how amazing it is, the reflections from lights has decreased and the sharpness is the best I've seen in years.

Left eye: Decided to go ahead with CXL on this eye at the end of November because it went so well on my other eye and I wanted to stop it getting as bad as the right eye pre-CXL. After 9 days of slow progress my vision took a turn for the worse, I looked in the mirror and my pupil had turned grey. I knew this wasn't good... so went into hospital first thing the next day. Turns out I had severe corneal hazing bang in the centre of my eye I was told, rather unfortunately, that my consultant had never seen such a bad case. It's now been 6 weeks and there's no improvement, I've gone from good vision to not even being able to see the eye chart let alone any lines on it! It's impacted my life massively as I've been signed off work, and cannot drive. Before I got the contact for my other eye I was actually unable to cross the road by myself, and even now it's hard (especially at night) as the light reflections are just insane. I've done a lot of online research and it seems in 92% of cases the cornea will clear but this can take from 6-12 months, and sometimes longer.

Overall I don't know how I feel about CXL... I've had the best and worst results possible. I just hope it returns to how it was or I don't know what I'll do.

Wow, thanks for sharing. Sounds like a ghastly stroke of luck. I hope it improves soon.

This has obviously worried me, because in a few months I'll be going through CXL on bad then good eye. I don't know much about haze, although it was one of the warnings from the consultant yesterday, but what did yours say RE the prognosis?

EDIT: Did you have epi off or just perforation?

Epi-off; they don't perform CXL with the epithelium on as it's not NICE approved.

Before the procedure there was no indication this could be an issue, especially as my other eye went so well. To be fair reports suggest this does only happen in around 3% of cases, and he says I'm particularly unlucky with the positioning of the haze being directly in the centre... he has seen it before but only around the sides of the pupil which hasn't really effected people as bad as me.

Wow I am really sorry to hear that Cripps. I am hoping all goes well for.you. That is why I am scared to go through the CXL. Hopefully everything will return to normal.

I only ask about epi because my consultant said at East Grinstead they only completely remove the epi in younger patients. So when I get done it will just be punctured or perforated rather than taken totally off. I was wondering if haze was a greater risk on procedures with complete epi removal.

does your good eye not make up compensate for the bad eye now?

Thats what i am worried about doing CLX - if something went wrong with my good eye it would be a disaster

Likewise Kieran. It's tough. As things stand, if I could freeze the state of things now, with one strong eye, then I'd bite your hand off. But the risk of my sight getting worse in my good eye, however low, is terrifying.

But then the only other option is wait and hope it doesn't progress. If it does, I'd regret not getting it done, but even if it doesn't I don't think I'd ever be able to forget about it.

There is a greater risk of hazing with epi-off, yes... but epi-on is generally less effective and there is the possibility of needing to repeat the procedure as it doesn't last forever. The fact that it's not available on the NHS round here was a factor for me as I couldn't afford to keep paying out £1,500 every few years!

My (new, lol) good eye does compensate in that I can read text and see TV okay etc. but the reflections from lights cannot be ignored. The glare from everything is horrible, I was wearing a patch for some time but I don't want to go 6 months with one on.

At the end of the day I can be regrettable about this happening to me, it's shit luck. But I'm not going to regret the decision to get it done, it worked so well in my right eye that inevitably I was always going to go ahead with it in the end. Ironically, if it was the other way round, i.e. I had hazing with the first CXL, I might have reconsidered... oh well

Its difficult to judge what to do - i am waiting for my next scan to see if there's any more progression - it hasnt got worst for a few years.

I will wait and see.

Will the haze clear? Has it got any better?

I have no idea, usually it does... but this shows what I can expect after 6-12 months:



Sorry it's so small! I've seen a couple of reports saying it will return to normal but to get there fully will take 2-3 years. My consultant said there is another way, which is to physically scrape the hazing off sounds fun.