UK Keratoconus Self-Help and Support Association

Hello - new to the site and struggling to negotiate so this has probably been answered lots of times somewhere else!

I'm a 35 year old teacher being offered CXL on NHS next year. I have to go for initial scans in new year and would love info from anyone who has had this done - what is the procedure? recovery? returning to work/ driving etc? I currently manage very well with rigid contacts but seem to be a good candidate for ths treatment.

I look forward to hearing from you - so pleased to find this site, never met anyone else with this condition! xx

Foxglove

I can't answer your question as I have no personal experience of CXL, but somebody who can answer will be along in a moment.

Welcome to the forum.

Andrew

Hi there,

Sorry I cant answer yr question has | havent had CXL myself but was just wondering where you were gettin yr CXL done has I thought it hadnt been sanctioned yet on the NHS. Are you on a trial - just wondering as we are considering it at the mo

Regards
Libby

my experience of cxl is that it can be uncomfortable and painful for a couple of days. I took 10 days off work for the procedure. Driving was probably comfortable after 2 weeks. I dont have cl to wear and manage with my good eye in glasses (bad eye cxl, and no use in glasses). I think there is a period of time after cxl that you cant wear cl for in the cxld eye.

That's really useful info thank you. Need to plan ahead a little for time off work etc. I am having treatment done in Exeter at the West of England Eye Unit - I have a new optometrist introducing the treatment there. I was quite surprised to read on here that it is quite an expensive private treatment.

Many thanks for your replies.

foxglove

Optometrist or Ophthalmologist? I had always thought that this was a surgical procedure and was undertaken by ophthalmologists.

Anyhow, we are all delighted to know that CXL seems to be in the process of rolling out in the NHS.

Every good wish

Andrew

Oh dear Anrew - you're all too clued up! i couldn't decide whether it was optometrist or opthalmologist when I wrote it - I'm sure you're right!

Merry Christmas! xx

And a very good Christmas to you!

Just wondered if anyone had any definitive answers on this yet? I had cross linking in one eye in the summer, had to go private at the time. Very happy, so far, with results. Eventually I will probably need it in the other eye (other eye at the mo shows no signs) I'm hoping I can do that one on the NHS...is this a realistic hope!? Or is it a bit of a rationing out at the moment, or only certain areas, certain criteria or are we still in trials?

The long term affects if any are still poorly understood which is why the NICE guidelines state more research is needed and this is why some NHS hospitals are conducting trials in order to answer the questions raised by the recent NICE consultation.

Every December there is a connfrence in Europe specially around the CXL treatment so as far as I am aware CXL is here to stay and work is consistently being done to improve it and to understand what (if any) long term healthaffects theremay be. I for one am sure CXL will become available routinely on the NHS, but as to when is still an unknown quantity.