UK Keratoconus Self-Help and Support Association

Hi all. I am new to this site, and it looks very helpfull.
I have keratoconus and the ophthalmologist has asked me if i want to have cxl done.
I can't believe they don't cover it on the nhs and that i have been given a price of £2400. i have rang various hospitals to find out if they fund it. and not alot of people know about this. theres hardly anyone to speak to or ask if collagen linking is worth having or if its a waste of money? So i came here and am hoping someone can help.
Has anyone had it done ?
Has it inproved your eyes or stopped them worseing?
Any info on this would help us so much. because we are going out of our minds not knowing what to do. It is alot of money to have the collagen cross linking done, but i would pay it, i just want to know i am not wasteing my money. Or would you go on the waiting list to have the cornea transplant done ?

Welcome to the forum.

Several people here have had CXL and I am sure they will reply and share their experiences.

Currently unavailable on the NHS howvere there are some NHS hospitals running trials such as the eye unit in Solihul and I think they have to apply to their respective primary care trusts (PCT's) for funding.

We had a similar situation with intacs a couple of years ago and the National Institute for Health and Clinical Excellence (NICE) requested feedback from our members which showed the positive results it gave them. From this information and that of the hospitals NICE have now recomended the treatment be made available on the NHS.

As a group we are hopeful that the studies the hospitals are doing will lead to the same request being made of the group by NICE regarding CXL. All being well CXL will then become available on the NHS.

I think some medical insurers have stumped up the money for those who have private health insurance.

Unfortunatly much help to you right now but it atleast brings you up to speed on where we are in trying to get it made available on the NHS.

All the best.

Hi coops

I have recently set up a website for people who have had CXL or are thinking of it and there is some information about CXL on there. There is a very very new message board there as well. The people posting on there have had CXL done and can tell you about it. http://www.cxlclub.org

There are also many people who will answer you here.

From my point of view as a professional, I have seen many people who have had it done and in all cases it has stopped progression and in cases where it has been combined with INTACS it has improved things.

It is slowly becoming available on the NHS - you have to understand that hospitals have by law got to go through long trial periods before introducing any new therapy.

As to whether it is right for you, that depends entirely on the condition of your eyes and no-one here can pass judgement without knowing the details. For example, it depends on your progression rate. If your keratoconus is moving very fast, then CXL will halt it where it is now before your cornea gets too distorted. If you are not progressing very fast, or have just been diagnosed and really don;t know if you are or not, then it may be prudent to wait until you see whether, and at what rate, you do progress.

You may not need CXL doing on both eyes straight away - generally one eye is better than the other anyway in KC. If you do decide to have both eyes done, then you should know that the settling down period can be unpredictable and my advice would be to let the first eye settle and get reliable vision back in it before embarking on the next.

Whatever you do ... do NOT leap into this out of panic. It is definitely not sensible to make a decision either way while you are "going out of your minds not knowing what to do ".

As to advice about waiting for corneal transplant - that very much depends on why a graft has been offered to you. If it is because of dense corneal scarring, then CXL would not help that anyway. if it is because you can't tolerate contact lenses or can't get good vision with them - you may not have actually explored all those avenues yet.

Just take a few deep breaths, calm down, and tell us all a little more about your situation!

Lynn

coops

Welcome to the forum

Gareth and Lynn have said much the sorts of thing that I'd have suggested. Know this; you are not alone and the advice that was written in large friendly letters on the cover of a well known book is good for your situation:

Don't Panic

All the best

Andrew

Hi coops,

Just want to let you know that I have had CXL/Crosslinking in my worst eye (RE) and it has been the best thing I have done for my KC since I found out about it. I had CXL almost a year and a half ago and and as of January 2008 until March 2009 my KC has not progressed in this eye, it has in fact the cone has reduced by 1.5D. The 'cone' is shifting from a sagging position on the under part of the cornea to a more central location. It has not corrected my refractory error at all and this remains really bad at a -7 but I am about to undergo PRK with another session of CXL to correct as much of my refractory error as possible. The 2nd CXL is to ensure its stability after the laser removes tissue as there is a possibility it will remove some of the previously Crosslinked tissue that has kept my cornea stable. If everything goes well it will repeat the PRK/CXL in my LE, but at the very least I will have the CXL in my LE as the KC in this eye is progressing (thankfully it is only slowly progressing for now).

I had it done privately here in the UAE (had never heard of it at all until I did some of my own research) and it was around 600 pounds per eye at the time, though with inflation here and the drop of the pound it is closer to 1200 pounds now. Luckily my health insurance covered it, but even if they hadn't I would have paid for it myself. I am trying to keep my own corneas as long as possible, as I really would like to avoid a graft/transplant (though many people have had successful ones).

Good luck with whatever you decide.