CXL for son - right thing to do?

[Laura Hook]

Hi,
Me and my brother both had CXL about 3 years ago when i was 13 and he was 17. In my case the aim was to stop very bad eyesight from deteriorating further but for my brother the aim was to keep his vision at a good level. Since the procedure our vision has remained stable and it was definitely not a decision my family regrets, i wish the procedure had been available earlier so the progression could of been stopped when i had good vision.

We had the procedure done under our consultant who we trust as he has managed my dad's keratoconus for a really long time, so if you choose to go ahead knowing the person doing the procedure can make a big difference in your confidence.

[dawny]

LizB the fitter is High Street but she does work for the hospital but this is the one that does not seem to have a lot of knowledge with KC - so I am looking to see if they can refer us to a larger or more specialised department - thank you although obvious I had not thought of that

Harker yes you are right as CL is very likely in the future regardless of CXL it is important that we get an experienced fitter

Laura thank you for your comments - it is great to hear of people that have had the procedure and like my son it is to prevent his eyesight deteriorating further. I am so glad that your vision has remained stable

It really does help to hear all your words of wisdom and experience thank you guys

[alphatron]

Hi

I was also advised not to go for collagen cross linking by my consultant. He was very against the idea but I decided to go for it anyway, its stabilised both corneas as well as resulting in some regression, I now have 6/6 vision with glasses but am hoping to get contacts to improve it further. Im really really glad I ignored my consultant and caught it reasonably early.

If I had left it to progress I would probably have had to have grafts, but these produce a range of results. If they werent excellent I would have had lo leave dental school as who has heard of a dentist with bad eyesight.

BTW I also had the surgery at Accuvision, but at the birmingham centre.

[Lynn White]

Hi Dawny,

I am an optometrist who specialises in keratoconus and who has fallowed through many patients who have had CXL. As people on these boards will know (and there are a number who are also my own patients) I was initially very cautious about this procedure but am becoming more and more positive it is beneficial as time goes by.

The lack of FDA and NICE approval seems a negative but it is not. The procedure has been around for 14 years now and the evidence in now more and more conclusive. It takes years for any new procedure to go through FDA (often seen as a "gold standard"), so the fact that it is not approved yet means it is still going through the process, that's all. It is useful to know that the time and costs involved in this are so high that it would not be considered to be put through if its merit was questionable. Certainly, the trials so far have been positive.

In the UK, it is in fact, being offered in some NHS centres but with limited criteria. Generally, one has to go privately for CXL.

Does it work and what are the downsides?
The evidence is now there that this does work to halt keratoconus progression. In some cases it does fail but that is often in really advanced KC. It does not produce any kind of instant improvement but rather causes the shape to become more regular over a period of years. It is my experience that one can get to a stage where glasses start to work better and I have seen this in patients where one eye was cross linked and the other not. The cross linked eye improved whereas the non cross linked eye carried on deteriorating.

Possible downsides: there is a 1 in 100 chance of getting a scar. This has a bigger impact on risk if you have it done on an eye that has very early KC with good vision. If you are heading for a graft anyway, that risk is much less.

Long term, we still do not know the risks but we are talking, really beyond 15 years now and again, if you are heading for a graft in any case, buying 15 years of time is worth considering.

Contact lenses
Even if your son has CXL, he still has to have CLs to see. It sounds like your son finds rigid lenses uncomfortable. There are soft lenses available (you can pm me for details) or larger rigid lenses or sclerals, so there are other options and they can be found in other hospitals if yours does not offer them. One thing to do is to research which hospitals offer alternatives and ask your GP to be referred there.

As Andrew says, this forum is for support, not to guide you what to do but I am very happy to talk more to you offline and go through the options more in depth if you want. My email is in my signature.

Lynn

[dawny]

Thank you all for your support and advice it has been extremely useful. An update is that we went ahead and he has had one eye done. We came to the conclusion that the vision was pretty bad so what have we got to lose - sons logic not mine!

The procedure went well, he had a couple of uncomfortable days but is now pretty much back to normal although vision is a little hazy still. He is up to have the other eye done when this one settles down.

Lyn thank you very much for your professional advice. I think contacts are the next step for him and I will take you up on your offer of pming you to find out more comfortable makes. He did have one bad experience with the rgp but having had the bandage lens he commented that maybe he could try lenses again. So one step at a time in this household but you guys have been great.

[jamesleicester]

Hi Dawn,

I went to see Accuvision in B'ham and found them extremely expensive (£2500 per eye)!!! I had CXL done on Harley Street in April and paid much than Accuvision wanted (£1500). I let Advanced Vision Care treat me and the care, knowledge and professionalism was first class! I strongly recommend going to see them.

My results so far are very good and the astigmatism has reduced quite a lot. I'm now wearing a toric soft lens and have almost 20:20 vision in the treated eye (I can read the PC screen easily with my good eye covered).

If you'd like to know more, feel free to message me. Knowing what in important decision it is, I'd be more than happy to chat to you or your son over the phone if you like. Just private message me for my number.

James, Nottigham.

[abull11wsm]

My son’s keratoconus was eventually spotted by an optician at Specsavers when he was having an eye test for new glasses. He was advised to see his GP who referred him to Bristol Eye hospital. At the first consultation he was advised to have hard contact lenses which would improve his vision but not prevent or cure the keratoconus. It took five months before he actually had the hard lenses after several visits to the eye hospital. The hard lenses were not comfortable and he preferred to manage without them. Bristol Eye hospital could not offer any alternative help other than a corneal transplant. After searching the internet for more information about keratoconus we discovered Accuvision offered Corneal Collagen Cross Linking treatment. Within a month of the first consultation in Solihull my son had received the Cross Linking treatment on his left eye. Unfortunately the cornea in his right eye had become too thin for the Cross Linking process. A year later, the news about his left eye is as good as can be expected and definitely better than battling with hard lenses. The team at Solihull have been fantastic with their care and support, answering all our questions and advising us on the next steps with his right eye. For anyone reading this who may want an alternative to hard lenses then please consider Accuvision as soon as possible. If only my son had seen them sooner, instead of struggling with hard lenses, then how much better his sight would be in both eyes by now.

[Andrew MacLean]

abull11wsm

Welcome to the forum. we are all delighted to know that your son managed to find a management for his KC that suited him. Many people who have CXL need subsequently to wear lenses, so the treatment is not really an alternative to contact lens wear but may make a valuable contribution to the management of the condition in some people.

Andrew