UK Keratoconus Self-Help and Support Association

Hi all,
I am 30 years ago and I have been advised to have cross linking as my vision is pretty bad especially in the left eye. I’m going to have this procedure done at Moorfields hospital in London however the optometrist said they are going do both eyes at the same time. I didn’t want to to challenge her but I have read that normally they do one eye and then wait a couple of weeks or even a month and then do the other eye. The cross linking procedure is due to take place next month so I was thinking if I should call and ask if I could have one eye done and then come back a month later or so instead of doing both eyes at the same time... I’m really scared and don’t want to go blind!

I had CXL done in September last year and wouldn't personally recommend having both eyes done concurrently.

The first 2 days in particular were very painful and I had issues with light sensitivity. I had some anaesthetic drops to help with the pain. I could only use one eye for sight for 6 weeks while I couldn't wear the lens. Wearing glasses hurt my eye, due to the operated on eye trying to see out of the glasses. If you get both eyes done at the same time, it may help with pain management as you're only 'suffering once', but if you wholly rely on your lenses for sight, you wouldn't be able to see for the duration of the time your consultant deems it necessary that you don't wear the lenses.

It's your body. No one can force you to have an operation you don't want. So if you only want to have one eye done at a time, then that's your perogative.

I would be suspicious of anyone who forced you into this position.

I realise you'll probably need to make your decision before then, but our next Zoom meeting is all about crosslinking. So do join us if you can.
https://www.keratoconus-group.org.uk/in ... g-on-zoom/

Hey,

I had my CXL in both eyes at the same time in 2019 November at Moorfields. I won’t lie, it was tough for the first 24-48 hours post op and I had to take 2 weeks off from work for recovery.

I had my 1 year follow up and they said things have stabilised. I’m currently using a rgb on the right eye and soft lens on the left, which is a compromise as hard lens on the left eye didn’t really work for me.

Do I regret doing CXL? No, because I would be scared that my eyes would progress for the worse, especially as my topographic images leading up to the procedure showed progression. Do I regret having CXL in both eyes at once in both eyes? No. I had a terrible experience with post op pain, unable to look at anything, rocking myself to and fro, waiting eagerly for the time to put some local anaesthetic eye drops in. But having to experience that in one go was far better for me than having to experience that twice. The only thing that scares me if there is progression of my KC in the future that I need another CXL, having to bear the pain again... but let’s see.

Of course, my answer is not bible, and there is always risks with CXL and ultimately this is your choice. Good luck and hope for the best for you