UK Keratoconus Self-Help and Support Association

Hello,
I am new to this forum and really need some advice please.
I have had keratoconus for around 18 years and have been using RGPS to correct my vision. I have been finding them hard to wear, especially my right eye as it gets really sore after a few hrs. The hospital have let me try scleral lenses for my right eye recently and have been having reasonable success with them(hard to get in). I have only had then for a week. Recently I went to see my consultant and he said that that I can try corneal cross-linking which may or may not work. I said yes i would like to give it a go. I am now having second thoughts. I dont know weather I should continue on with the scleral lenses or try the corneal cross-linking procedure. Also would anyone know if the procedure means taking part of the epithelium off? Has anyone had the procedure and found it painful?

Thanks
Khalid

I guess I'm in the same boat as you atm, although I only found out I had it last year! Have you had CT scans to see the progression? Usually they're spaced 6 months apart to see if you're eligible. It would be interesting to know because sometimes the cornea can be too thin for CXL to be effective, hopefully that wouldn't be the case with you. As far as I know NICE have only approved epi-off so I should think that would be what you would get, epi-on doesn't seem popular in the UK...

I've not had mine yet (hopefully within the next month or so) but from what I've read you can get pain for 2-3 days after but it soon dissipates. I think a reply on here from someone that performs them saying it was basically a no brainer shows that it's worth doing, being able to stop progression sounds good no? Good luck fella and fire away with any other questions

Well I am 43 years old and It looks like my keratoconus is not progressing now and the consultant said that it probably has stopped progressing at my age. I've read that the procedure is successful at early stages of the condition so that why I am having second thoughts about it right now.

I see well yes it's almost a given that progression stops around the age of 40. To be honest I find it a strange recommendation knowing your age...

I'm not too sure it's going to do much for you. There are rare cases where people see an improvement, but I guess it's up to you to decide whether that's worth the money etc.

Thats what I was thinking. Its on the nhs, but I am wondering if it's worth it or if should see what the scleral lenses are like. Still early days yet with these.

Personally I'd have a CT now and in 3-6 months time and look at the progression, if there is none then leave it... at least it's on your NHS though, round here I have to pay for it. Can I ask what area you're from?

Im in Scotland. My vision hasn't deteriorated a lot but contact lens intolerance has with my rgps. The scleral lenses seem to be better though