Cross linking

[Alison1]

Hi
My son as been diagnosed with KC recently (thankfully at the present moment it's mild) and We're looking at having the cross linking treatment done.
We've been for 2 private consultations and have been informed by both consultants that the pain experienced for 48 hours afterwards can be extreme.
If you've gone through the procedure, could you please let us know how painful you found it, if you have any recommendations for pain relief after the operation and if you have any recommendations for a practice to carry out the treatment within Lancashire or North Yorkshire.

[Anne Klepacz]

The Royal Hallamshire in Sheffield has been offering crosslinking on the NHS for a number of years now. And a member recently wrote to say that Manchester Royal Eye Hospital have just started offering CXL on the NHS.
Pain relief is obviously prescribed after the procedure. I'll leave it to those with experience to tell you how they found it.
Anne

[James_Ldn]

I've had cross-linking done in both eyes.

Yes, the first 48 hours are painful. However, I wouldn't say it was unbearable. The best thing to do is to go to bed and try to sleep.

When you think about it, 48 hours isn't too long, and from my experience I'd say that the first 24 hours are the worst and then it tends to gradually calm down after that. But if it stops the KC progressing in the long term, then it's certainly worth it.

Your son should be prescribed painkillers by whoever is performing the cross-linking, which should help a bit.

James.

[Alison1]

Thank you just wanted to now if you had both eyes done at same time and did you have your eyes scraped and where did you have it done still unsure where to go

[CrippsCorner]

Hi Alison,

Although I've not had mine done yet (hopefully very soon) I may be able to offer some general help. It's very unlikely both eyes will be done at the same, as then it'd be hard to get around! It's usually a 3 month gap between eyes getting done... has your son had CT scans to determine what speed the keratoconus is progressing? This helped me to decide which eye to get done first, as obviously I want to go with the one that's deteriorating quicker.

At the moment, only epi-off (so yes, 'eyes scraped' as you lovingly put it lol) has been NICE approved so the majority of the time, that's the treatment offered. It may sound bad but it's meant to be much better in the long term as sometimes epi-on has to be repeated. Obviously you want to avoid that for costs and going through it all again.

I too, am trying to decide where to get mine done. I'm seeing if I can get some funding towards it but it's looking unlikely, so I have the option of a local private place (BMI) or going to Moorfields in London, which is meant to be the 'best' but I don't know their waiting times yet!