UK Keratoconus Self-Help and Support Association

Hi all,

Im new to this site.

Thought it might be worthwhile posting on here to gauge some reactions and see what is best to do next for my current condition.

I discovered i had KC about 2 years ago but I think id had it for some time before that. Im now 28.

I was put to a specialist in Aberdeen (Where I am from) who stated that glasses and regular contacts would not help and that i would need a special fitted one. I believe its a rigid one or something like that. We spend nearly an hour in the first session trying to get this hugh piece of plastic into my eye but it was never really working without having air in the lens or general irritation. So he told me to go away and come back in a week to see my progress. I returned and still could not get this lens in my eye. We spent nearly another hour but still to no avail. Once i got home i did manage to get it into my eye on mybe a couple of occasions but it never felt right and it was making my other eye react by jittering all over the place. Also I became very consious that this plastic was clearly visable over the whites of my eye meaning a didnt want to wear it.

So since then ive given up on the lens and just battled through it. However recently my eye has began to weep a lot more and im finding myself rubbing the eye more than ever.

I was away travelling and found out from a friend that you can now get treatment for the condition (Something i was told by the local optition was not available for KC sufferers) He Said that you had to go to Manchester for the treatment which wouldnt be a problem but im trying to gauge costs or the treatment and after looking at some professional websites (accuvision.co.uk being the best) I noticed there are a few proceedures that can be done.

So really i was looking for some advice it lehmans terms as to what might be best for someone like me. I really dont want to have to wear the lens as im quite a social person and feel like everyone would stare at homw obvious the lens is. But i would like to get whatever poceedure is best and affordable.

I am not sure what treatment you mean that is available in Manchester but nowhere nearer to where you live.

There are now several surgical interventions available for people with keratoconus, and a number of lens types available also. If you are not managing with RGP lenses, why not ask if you can try any of the other lens types available: hybrids, piggy back, soft lenses for keratoconus, haptic (scleral) lenses etc.

Other treatments include INTACS (a slight and reversible surgical procedure where they insert some semi-circles of plastic into your eye to flatten the cornea: this is available in Scotland on the NHS), Crosslinking (where they stiffen your cornea by dripping riboflavin into it over a period of half an hour, and then fix the riboflavin in place with uv light: Crosslinking is not generally available on the NHS but a number of NHS consultants do offer the treatment to private patients. Also, Crosslining is under trial in some Scottish hospitals, so if you could get onto a trial you may benefit from this treatment without having to pay).

Both of these treatments depends on our having remaining cornea tissue of at least 400 microns thick.

The general advice to people with KC is that they avoid laser treatment of any sort. this is because our corneas are already thinning, and laser treatment would only make the cornea thinner; possibly to a dangerous degree.

All the best, and welcome to the forum!

Andrew

Intacs require a cornea of no less than 450 micron thickness.

The aim of any corneal surgery for KC is to provide a corneal surface whereby vision correction is easier so by no means certain that post surgery you would be free from the need to use contact lenses. This is because KC is often described as a bespoke conditiuon because it appears to be so different in how it develops in each person.

Regarding putting lenses in your eye, at my hospital they take as long as it takes to teach you to put a lens in. You can only go home with the lens once you have managed to put the lens in and out of each eye at least three times. For me this took a couple of hours, I know of people whio have taken longer and some who have managed to get the hang of these in a metter of minutes.

It was hard for me to get used to lenses because I had a phobia of things in my eye but with time I managed to overcome it.

I think Andrew and Gareth have covered the surgical options available for KC.

I have been doing some research myself about these options and am now going ahead privately, but will be travelling some distance (north west to south east - that reminds me i need to get accomodation sorted) as i felt that the clinic i have chosen provided me with the best information when asking questions, have reassured me throughout all communication (initially by email and phone, then in person) that they understand KC, the implications of KC and the procedures they are undertaking. Yes the cost is slightly more (without travel expenses etc), but as was said to me, and i have said to my mum, i would rather pay more for the procedures and have the surgeons that understand KC and take their time rather than going to a chain clinic who does every procedure on the eyes under the sun, and doesnt give much reassurance that they know KC particularly well.

Talk to your clinic about the procedures, whilst they may not undertake the procedures themselves they may know of a surgeon who does the procedures and can recommend you to someone.

Just to add that if you'd like the DVD of our 2007 conference, which included a talk about crosslinking and Intacs, and all the different types of contact lenses used for KC, just e-mail your postal address to anne@keratoconus-group.org.uk and I'l put a copy in the post to you.
Anne

Kevin

How are you getting on?

Andrew