UK Keratoconus Self-Help and Support Association

My son Andrew (17) has just had an Orbscan which confirmed suspected Keratoconus.
Andrew noticed he had a problem in one eye about a month ago and after the usual opticians visit he was refered through to a consultant. Having seen the consultant he is now waiting for an appointment with the hospital's optician.
The expectation is that he will be fitted with contact lenses in the next few weeks. Andrew seems very relaxed about it all.

The consultant's intention is to do a repeat Orbscan in 6 months and see if there has been any further deterioration before investigating any further options.
Having read through the tretment options on this site i am thinking Corneal Collagen Cross linking with Riboflavin seems the ideal answer (Is this a NHS option?). It seemingly halts the deterioration in its tracks.

With very little understanding of the condition and how quickly this condition progresses I am obviously anxious about waiting for a possible deterioration in his "good" eye. The good eye did seem quite regular apart from low corneal thickness.
I would be most appreciative if someone could give me the benefit of there experiences.

Thanks



Nick Molloy

Hello Nick and welcome!
It's great that your son is relaxed about it all - that's half the battle. But of course that doesn't stop parents worrying about what the future might bring. How quickly keratoconus progresses varies hugely - in some people it stays mild, in others it progresses and then seems to stabilise, while others seem to progress faster. So waiting to see what happens over the next 6 months is definitely the sensible option. And most people with KC get a big improvement with contact lenses, and do well in them once they build up the wearing time. Crosslinking is a recent addition to the options for the condition. NICE (the body that approves treatments for NHS use) is currently holding a consultation about it and will reach a decision before the end of the year. So in 6 mths time, we'll know whether it will be available on the NHS.
As well as what's available on this site, we also have a basic information booklet about keratoconus, and the DVD of our 2007 conference covers all the current options for KC. If you'd like me to send you these, just e-mail your postal address to anne@keratoconus-group.org.uk
In the meantime, I hope Andrew's next appointment goes well.
Anne

Hello and welcome to the forum

Please give Andrew our very best wishes.

Crosslinking may delay the progress of keratoconus, and many people have thought it worth trying. Andrew may well come to the same conclusion, although there are some who have opted not to go for that option.

Whatever Andrew decides, we wish him well.

All the best

Andrew

Hi Nick,

As a professional I would have to say there is no "ideal" answer to anything! Every procedure has its pros and cons. What can be said is that cross linking is showing tremendous promise and certainly appears to stop the condition dead in its tracks even for rapidly progressing cases. Current studies and experience go as far as around 11-12 years follow up and that is showing excellent results. Weighing on the other side is the fact we do not know what happens in 20 or 30 years time... which is an important point when considering the treatment for a teenager. However, it is difficult to wait for a time lapse of that long to make a decision, so you have to decide on information available here and now.

Anne has explained that keratoconus is different for everyone, which makes it actually quite difficult to judge from experience of others as you will get conflicting reports. There are some with keratoconus themselves and facing the same sort of decisions with their own children - many feel that getting CXL straight away will prevent their children going through the sort of difficulties they had themselves. Others think that waiting to see how the condition progresses - or not - is a preferable option.

My advice would be to make no decision at all until you have thoroughly investigated the condition and feel comfortable you know as much as you can about it. There is no rush here - a few weeks is not going to make a huge difference, so read up as much as you can on keratoconus and CXL. As Anne says, the next 6 months will indicate how quickly or not the condition is progressing and that can inform your decision.

Now as to efficacy of CXL in general, I fit people with contact lenses after CXL and so have been able to monitor how effective it seems. My experience so far as been that, used alone, it tends to freeze the condition in place with only a mild improvement in the condition (as far as level of short-sightedness is concerned) but often appears to improve the corneal shape and make it easier to fit contact lenses. More dramatic improvements appear to occur when it is used in conjunction with INTACS - these are semi circular rings of plastic inserted into the cornea to regularise its shape. There is some argument whether this should be done before or after cross linking but in my experience, before CXL gives the better results. In your son's case, this probably would not be necessary as he is an early case.

The only case where I have seen regression and indeed continued fluctuation of the cornea is where the epithelium was only partly removed. Normally, at least here in the UK, the whole of the outer layer of the cornea - the epithelium - is removed before treatment. In this particular case, the cornea was "pricked" in a grid fashion and this possibly led to cross linking taking place only in certain parts of the cornea.

I have put some information on cross linking on a website (and a forum attached) at http://www.cxlclub.org if you want to have a look.

Lynn

Thank you very much for your advice consideration and reassurance. It has been most welcome not only to me and Andrew but also to the wider family.
I have introduced Andrew to the site and suggested he should have a look so as to gain a greater understanding of the condition. Hopefully he will make himself a member and take full advantage of the information available and the support the group offers.
He will be busy these next few weeks hiking in Scotland with his friends on a Duke of Edinborough Award Scheme followed by a holiday in Paighton, so hopefully it wont seem long before the contacts are fitted and he gets some normality to his vision.

Anyway many thanks once again.