UK Keratoconus Self-Help and Support Association

Hello all
I found this forum a few weeks ago just before I was due to have crosslinking and read lots of posts from people about their experiences which helped me to prepare. Thought I'd share my recent experience of crosslinking (10 days ago) given that at 58, I was told I was pretty old to have the treatment.
I was diagnosed with KC in both eyes about 3 years ago, my right eye has progressed quickly and after delayed referral (mostly due to COVID) I was accepted for the procedure at QVH which took place 2 months after the first consultation (which I thought was pretty quick).

The consultant told me to expect severe pain post-procedure and to anticipate needing to lie in a dark room for a few days with plenty of painkillers (which also seems to be the experience of many people on this forum). As I live a 5 hour drive from the hospital, I was keen to get home asap before the agony kicked in - but it didn't. I was lucky enough to have only mild discomfort for a couple of days with some light sensitivity, by the time I went for my follow-up 4 days later, the bandage contact lens had fallen out and I had no pain at all. 10 days on, my eye feels fine, vision is about the same as before although possibly with a bit more ghosting which I have been told will settle with time.

If I need to have the left eye done at some point, I will do so with no hesitation.

Hello Linda and welcome,
As you say, it's unusual to have crosslinking after the age of around 35, so thank you for sharing your experience. And it's heartening to read of someone who wasn't in agony for the first 24 hours after the procedure! Do let us know how things go as the weeks and months go by - as you've been told, things can continue to change for a while. I do hope it all works really well for you.

Welcome to the forum Linda,

I was 34 when I had my first eye done (well 33 actually but it was the day before my birthday!) and I thought I was in the older age bracket but it goes to show that none of us know what life will throw at us! It’s good that you had no real pain after.

My first eye (left) was the first and I was in agony for two days after with the pain easing off in the third day. However my second eye only experienced some mild discomfort in the first day, I only really experienced light sensitivity with it for a few days. I really don’t think there’s a textbook experience!

As Anne says, keep us posted with progress