UK Keratoconus Self-Help and Support Association

Hello folks, I am contemplating getting CXL in my right eye as it has shown a slight progression. The visual accuity in my right eye is not that bad, corrected with glasses. I am just curious as to anyones experience with CXL. Does it have any chance of actually reducing the KC? IS there any hazards? I am getting a corneal graft in the left eye in 3 months so I want to proceed with caution in any other eye procedures.

jamesar

I have not had CXL, my condition was too far advanced by the time it became a possibility.

I do understand from others on the forum that there is an increasing body of experience around the world that CXL has been associated with the non-progression of KC. that has to be taken with a slight bit of caution: most people with KC never progress beyond the mild stage of development, so part of the CXL effect may be just the normal stabilization of the condition at an early stage.

That said, there must be others who have had CXL whose condition would have advanced, and who are able to live their lives for many years without any further problems from KC.

All the best, and let us know what you decide.

Andrew

Hi Jamesar,

What Andrew says is correct, though I would go a little stronger than that and say that CXL studies do seem to suggest that CXL not only stops progression but also does have a positive effect over a period of around 2 years in reducing the corneal distortion due to KC.

I am also a member of the US yahoo KC group and I have recently put 2 stories from there of how CXL has helped people on my Keratoconus Evaluation Network site.

Please note these two stories are of patients in extremis - not a mild case like yourself - but they do illustrate how useful CXL can be.

No-one obviously knows long term effects but CXL has been used successfully for 11 years now.

Lynn

Thankyou both. I have decided to go ahead and get the CXL done. 1700 bucks though!

1700 Australian Dollars! Is that for one eye or for both?

Seems a lot, but I guess it isn't so much when you think of the cost of scleral lenses.

All the best

Andrew

its 1700 per eye.
im getting my left eye done eventually.

reason is, in australia they still recognise it as experimental so no health fund will cover it.
my doctor said it costs them 800 just to get the drops into the country.

luckily my parents said they'll pay for mine.

That works out at about GBP 680 per eye. You are indeed fortunate to have parents who can meet this tab; and hasten the day when the UK and Australia and other jurisdictions around the world see this as an established therapy.

All the best

Andrew

I wonder how long it will take to get approved and the health funds to cover it. I mean $1700 is a bit much for me seeing as i just payed off the $3500 for my failed intacs, $1000 for my failed mini sclerals and countless thousands for other eye stuff. Damn this getting so expensive. Very frustrating. My friends are flying around the world, buying new clothes and pc's and here i am spending every cent I earn on eye procedures that alays seem to fail. I always thought that the aussie health system ws alot fairer than other countires like the us, but really, ity isnt that much fairer

I know that we love to knock our NHS in the UK, but the truth is that, by and large people with KC get a good deal.

We don't have to pay more than £105 a year for a lenses (£52.50 per eye). If we have a lens dispensed and it does not work, either because the fit is poor or the power changes, we have another one dispensed free.

Many therapies are available, if not in every hospital then at least through most hospitals. INTACS is therefore free, and CXL is increasingly being offered as a component of a study.

Even transplant surgery, the 'nuclear option' for people with KC is available free.

Is the system perfect? Not at all, but it doesn't involve us in borrowing large sums of money to have treatments.

All the best

Andrew

hey jamesar, did u not have insurance for the intacs... NIB covered the cost of mine on Top Cover, i only had to pay the 250 excess.
I'm seeing my doctor on tuesday, i'll see if i can get any more information on if they think the CXL will be covered anytime soon. I'll let you know.