UK Keratoconus Self-Help and Support Association

Hi,
I'm new to the forum and would appreciate your help.
My son is 30 and has been diagnosed with KC. Worryingly he had Lasik when he was 21 to correct quite severe myopia with astigmatism.
I've been reading on here trying to understand KC and have felt upset when I realised there's no hard and fast treatment but a series of trial and error management options which may or may not help.

The questions I have are....

1) Has this condition been caused by my son having Lasik do you think?
2) Obviously he wants to be treated by a hospital with a solid track record/good experience in KC. How do I find out where the 'centres of excellence' are for this condition (if they in fact exist)?

Thankyou for your help. He has an outpatient appointment in February with Queens Medical Centre in Nottingham.

Hello Julia and welcome to the forum. Please also tell your son that we exist and how he can find us!

JuliaF wrote:
1) Has this condition been caused by my son having Lasik do you think?
2) Obviously he wants to be treated by a hospital with a solid track record/good experience in KC. How do I find out where the 'centres of excellence' are for this condition (if they in fact exist)?.

The first question is hard to answer, except to say that there is a theoretical possibility that laser treatment can create a predisposition to develop keratoconus. Your son might get a more definitive answer from his ophthalmologist.

I know that around the country there are several centres excellence in dealing with keratoconus. My own hospital in Glasgow is one of them. I am afraid that I don't know about your area, but there is sure to be somebody along in a moment who does.

Every good wish.

Andrew

Thanks Andrew for responding

In addition to the queries on my first post, I now have another!! I've just been scanning through the list on this site of Registered Optemetrists who've expressed an interest in fitting KC patients, and I see that Queens Medical Centre Notts isn't on there .... although I understanad they do have a contact lens department in the hospital. Does that mean that this hospital are going to be unable to help my son? I'm feeling a bit confused and overwhelmed at the moment

Don't worry too much about the absence of your hospital clinic from the list. I guess our aim with that list was to give people an idea of which high street optometrists were skilled at fitting people with KC. I think that my own hospital is not named there and they are the gold standard service in Scotland.

All hospital contact lens specialists are experienced at fitting people with KC, although not all will offer the full range of lens types or lens materials.

Andrew

Hi Julia

All the optometrists on the list are those who have registered with the forum and asked for their details to be added. When I was invited to attended the HOAC 2009 coinfrence I spoke with some optoms from Queens in Nottingham and they treat many people in your sons position.

The FDA in American and the US Defence department are concerned about laser eye surgery, they have launched an investigation - LASIK surgery under US Review

The midlands is bless with several hospitals well respected in KE traetment. Queens is on, the is Leicester Royal Infremary, University Hospitals Wlasgrave in Coentry and the Birmingham Eye Center.

There are a number of laser eye clinics that perform CKL on the eye before the continue with the LASIK or LASEK eye surgery so they themselves may perceive there to be a link between this treatment and then later down the line Keratoconus type symptoms developing.

Gareth, thanks so much for your reply. It is very reassuring that the Queens will be able to deal well with Rich's KC. It all feels rather scary at the moment and naturally I worry for him and want to help him find the best advice to ensure he gets the best possible treatment.
I'm not sure what's covered on NHS and what isn't. I suppose the hospital will advise on that? This too is a worry - financial implications.

Please excuse my ignorance but what does CKL stand for ?

Julia

CKL was a trypo, sorry typo!

CXL is Corneal Collegen Cross Linking, this is a procedure aimed at strengthening the cornea and so halting the progression of CXL. Some NHS hospitals are testing this and NICE looked at CXL as part of their consultation process. They have suggested furtehr studies need to be done on thsi process before they decide if it should be available on the NHS, but there are a number of clinical trials underway and a number of private consultants offering this treatment.

If your son is in the NHS system, then he should expect to pay just over £50 per contact lens. In most areas, this payment will last 12 months or longer if lenses don't require changing. Basically you pay for the lens and if it needs changing within 12 months, the new lens is usually free, some hospitals even offer a replacement lens free if one is lost in this 12 month period. So for both eyes this is just over £100. Unfortunatly we have to pay for contact lens solutions despite this being raised in parliemnt and health ministers stating that if there is a medical need for contact lenses the solutions are free. this is something the group and others are fighting for.

Hi Julia,

I appreciate this is a concerning time for yourself and your son. Take heart beacuse there is hope and more options than there have ever been! I am sure you will discover this, as you are already puttting in the effort to find out for yourself. May I suggest you visit the centre where the initial treatment has been performed. The clinic should still have all the necessary pre and post-operative data which is invaluable for any clinican to be able to assess the current status of your son's eyes. It may provide the clues to answer some of the questions you now have.
If your son now needs contact lenses to correct his vision then most Hospital Optometry Departments or specialist contact lens practices will provide a good service. To explore the possibilty of stabilising the progression of the condition or indeed correcting his vision it would be best to seek out an expert laser treatment provider which offers corneal collagen cross-linking.

All the best
Anthony

... or you could check to find out if Cross Linking is an option on the NHS in your area.

Absolutely right,
however in some cases it is possible to perform further laser treatment to improve the vision, together with cross-linking to stabilise the cornea. Unfortunately that option is unlikely be discussed by the NHS.

Anthony