UK Keratoconus Self-Help and Support Association

Hi Guys,

I have been booked for the CXL cross linking next week. I am 23 and I am so scared of what to expect. I have been watching videos and doing research and it sounds really scary. I don't have a high threshold for pain so I'm really dreading it.

Has anyone done it before? Can I get some advice and information of what to expect. I'm getting CXL on my right eye first... Then my left eye wd be next after my doctor confirms.

Also, I'm having struggles at work as they are not planning on paying me fair while I'm away for surgery. The leaflet said I need 2weeks off work in order to recover from the pain.

Any advice would be much appreciated. This is really freaking me out.

Thanks,
Chika

Hi Chika,
There are lots of people here who have had CXL done. I hope some of them will reply to you, but meantime if you put CXL into the search on this forum, you'll be able to read lots of posts which should reassure you. Is it the Moorfields leaflet you've been looking at? http://www.moorfields.nhs.uk/sites/defa ... king_4.pdf
Why don't you give a copy to your employer so that they understand what's involved.
All the best.

Hi Chika,

Don't worry! Pain wise... it'll all be over in 48 hours, in fact usually 24 hours. It does vary though, my first went fine and I coped very well, I was outside sunbathing a couple of hours after the procedure! With two pairs of sunglasses on lol. My second eye didn't go as well though, and it was very painful during, and worse than the other one after. However even then, the 'during' part really only lasted 10 minutes or so. They give you plenty of drugs to help with any additional pain you might get.

As for time off, again, it varies. With my first eye I was back to work after a week, and back driving again after two. However there was a complication with my second eye which saw me off work for around 6 weeks, and not driving for around 6 months. That is rare however, happening to <3% of people, and it's 75% recovered now.

Thanks guys for your reply. I have done it now and thank God the pain is over now. Mine lasted for 48hrs but the whole procedure was scary and I felt like I couldn't breathe lol.

I did my right eye so the vision is still blurry and I took 2 weeks off so that's enough time to heal and rest hopefully. I sd be doing the left eye in about 3 months from now.. Sigh! Thanks a lot. I know it's not corrective but some people hv experienced an improvement in their vision after the procedure... Im praying that wd be the case for me.