UK Keratoconus Self-Help and Support Association

I have just had my second cross-linking treatment for my Keratoconus and thought I would share my experience, especially as cross-linking is quite a new procedure.

I was diagnosed with Keratoconus by my High Street Optician (which I understand is quite unusual) - from this point I spent a lot of time (as many of us do) research what it meant on the internet. As I had been diagnosed at an early stage I was keen to look at some of the processes that intended to prevent the keratoconus getting worse. After reading up - i had to appreciate that any process would not give me 'perfect vision' but the emphasis is on arresting the progression of the coning.

I found a few places that offered Cross Linking - I was attracted by the concept of the procedure and the fact that the procedure was done while I was awake and was a quick process.

I ended up going to a company called Accuvision. I live in Hampshire so I had to make quite a few trips up to London - but it was worth it. I don't want this to sound like a massive plug for Accuvision, but they were fantastic. The pre op, op and post op care was faultless. This daunting treatment was explained every step of the way and the surgeons talk you through the process as it happens (which lasted about an hour all-in-all).

I process itself involved colegen based eye drops being put into the eye which are then 'activated' by UV light. The op itself is totally painless. The most discomfort I had was in the first night, with the eye being quite sore. But eye drops and pain killers help with this and from the second night onwards I had not trouble sleeping.

I had my left eye done in November and that has been a massive success. The vision has stabalised and I can now only need a weak prescription for that eye. I am now waiting for my right eye to settle down before I get my final prescription.

Cross-linking has been reported to stabalise the cornea and increases it's rigidity by 300%. The long term effects aren't fully understood yet as it is a new process but it is a case of so far so very good for me!!!

If anyone wants more advice or information about this treatment then please get in touch.

Paul

Paul

Welcome to the forum!

Can I ask one or two questions? You say that your keratoconus was identified by a high street optician, actually I think that this is fairly common. Did you ever get a referral to an NHS Ophthalmology clinic? If so, what did your consultant say about CXL etc?

What made you go private? Was there no option to have CXL at the NHS Hospital where you are seen?

Thank you for writing so positively about CXL. As your KC was identified at an early stage, it will be interesting to see whether there is any future progression. It is of course the case that most people with KC never progress with their condition beyond the point where it can be managed by glasses or contact lenses, but each story adds to the overall picture.

All the best, and thank you again for sharing your story.

Andrew

Hi Andrew,

I was made aware from an early stage that CXL would not be on offer from my NHS hospital which made me look into private options. I was lucky to have family help pay for the treatment (about £1,500 per eye) which obviously helped!!

I will come back to the forum with updates on my progression as and when they come about!!

If people want some more in depth info then this is a link to the webpage of the surgeon who performed my CXL. http://www.chadrostron.co.uk/

Paul

Thanks for that link.

It should not be long before NICE is able to look at the results of CXL treatments and decide whether it should, like INTACS, be approved as a treatment for KC throughout the NHS in England and Wales. In the meantime I know that it is being offered in some places but not in others. This situation is so fluid that it would probably be impossible even to keep up a list of places where it was and was not being offered, and the basis on which access was being restricted.

Every good wish.

Andrew

I. Asked my doctor about CXL. He said my corneas were too thin for me to be considered for the study. Does this make sense to anybody?

private104 wrote:I. Asked my doctor about CXL. He said my corneas were too thin for me to be considered for the study. Does this make sense to anybody?

Yes, it does (sorry),
It is because part of the process of the CXL treatment involves scratching the surface to make the drops be absorbed ore,a nd if the cornea is too thin, this is not practical (or could damage the cornea ore than it helps it).
Rosemary

I had mine done at 254 microns and it worked to stabilize my cornea. This can be done without removing the epithelium. I went to Dr. Swanson in Mexico, he will do it on very thin corneas if you are out of options. I had it done in that eye twice.

Actually, one of the problems about corneas being too thin is that the UV can penetrate too far into the eye through a very thin cornea. Scratching the cornea helps with the absorption of the activating drops - but actually the "scratch or no scratch" is still under a bit of discussion.

It might be that a cornea is too thin for a study because when a study is set up, certain guidelines are laid down at the outset and have to be followed for ethical reasons and to keep the study scientifically valid. However, that might not mean it is so thin that no-one will treat you with CXL - as JMRmail points out.

Hi all,

I came to this post by looking to see if I can get this treatment (Crosslinking / C3R) on the NHS. I'm based in Prague, Czech Republic, and was fairly recently diagnosed with Keratoconus on each eye, and deteriorating quite quickly.

The doctors suggested this treatment, which is available in two places in Prague, as necessary for the stabilisation of my corneas - otherwise I'd need new RGP lenses every few months. The places offering the treatment here are the Lexum Clinic and the Military Hospital (don't be put off by the name - it has a a great reputation). Google will help you find those. I heard it's also available in Brno, if that helps anyone...

The price per eye for C3R at the Military Hospital is 13,000 Czech Korun, about £430 at today's rate. And I'm guessing flights will be a bit cheaper to Prague than Mexico.

I haven't had the treatment yet, but from what I've been told, this is a non-scratch place, and their history with this treatment is 100% success. They've been using it about 18 months in the country. Anyway - my appointment is in October, I'll come back with an update around then.

Sculptor

Welcome to the forum

The rate per eye that you have been quoted in Prague looks like a real bargain! I guess that exchange rates etc have a lot to do with the difference there from the sorts of prices you see quoted in the UK Private Sector.

All the best

Andrew