UK Keratoconus Self-Help and Support Association

Hi all

I'm a new member who is scheduled to have cross linking done on Monday. I'm insanely nervous and scared. I understand it's a painful procedure. But that's about all I know about it. I have tried to search but couldn't find exactly what I wanted to know.

I was wondering if someone could answer a few questions I have.

How long is the recovery process?
Will I be able to see?

Hi Jay,

Welcome to the forum.

I've not had cross linking myself but there are several people who are on the forum who have had and hopefully will see your posting and will be able to answer your questions.

Lia

I hope it goes well. I'm booked to do both eyes in two weeks time with Mr Maurino at Moorfields.

Hi Jay, welcome.

I've had one eye cross-linked, and have the other this Friday! The operation is totally pain free, although you can feel stuff, it's totally numb. I got home with a goody bag of painkillers! To be honest I felt fine, just sat outside sunbathing (with an eye patch on) however after about 5 hours the pain started to slowly creep in. Not going to lie it's not the greatest feeling in the world, but my operation was around 15:00 and pain came in around 21:00 and I went to bed at midnight, therefore just a few hours of discomfort... woke up in the morning and everything was fine, not an ounce of pain. I've heard it can go on for a few days, but this wasn't my experience, I'm hoping it'll be the same the second time round.

Your vision will be horrible and blurry for around 1 or 2 weeks. They didn't actually issue me an eye patch (I guess paying £1,515 doesn't get you that huh) but I chose to wear one most of the time to cut out all the glare. My advice is don't do too much too soon... I went to the pub with my girlfriend for a meal and a pint 5 days after the procedure and it was a mistake. This time, for the first week at least I'm staying in! Maybe go for a gentle walk with my mum. It probably helps that it's dark outside all the damn time at the moment. Your sight will start getting back to normal after about 3 months, but it can take up to a year for it to settle down completely. This may mean quite a few trips to the opticians. I'm currently waiting for a new prescription but it'll probably change again by the time I get it

Overall, you're probably worrying too much I'm still nervous this time round as they're doing my good eye, meaning I've got to rely on my bad eye for a while... anyway good luck and pop back and tell us how it went.

Olly.

Good luck with the procedure it will be interesting to know how you got on as I' m getting CXL in right eye next week.

Well here I am the day after. Not going to lie this one hit me harder... for some reason this time I felt extreme pain when the clamp went in the second time. I almost couldn't bare it but I knew that it would only last 10 minutes so somehow got through it!

I was straight on the painkillers this time, had a pretty uncomfortable evening tbh.

Still it felt better overnight and I woke up half an hour ago and pain level is down to about a 2/10. Spoken to consultant this morning and he said no two eyes are ever the same so it's just unfortunate that this time it reacted worse.

Hope I haven't put the fear of God into you! If yours is like my first one, you'll be fine. Good luck!