UK Keratoconus Self-Help and Support Association

After a year of continuous reducing vision in 1 eye I was told I have KT. I'm pretty devasted and struggling to get my head around it after 32 years of perfect vision. I'm looking into the C3 R treatment. I noticed a few people mentioning David Jory in London. Has anyone had this yet? Can it be done at any stage of the condition? Thanks. Louise

Hi Louise,

Welcome to the forum.

I am unaware of anyone who posts here haing C3R done in the UK. However look for posts by Jayuk of for C3R using the forum search function and you will find his diary.

The concensus now is that the surface of the cornea is scraped prior to treatment which makes it more effective. Jayuk did not have this which was his decision. He did get improved vision in that the condition regressed which happens in some cases with this treatment. In others it stabilises but they still need to correct their vision with glasses or contact lenses.

This treatment seems to be used in the mild/moderate cases which is a relative term. I have not yet seen any research for this treatment on more advanced cases. When I was looking into this, I did ask the question to the specialist in Dresden and after much thought decided in my case it would be too risky.

However things to remember is KC can stabilise, mine is quite severe in one eye and has been stable for over 2 years now. 90% of people with KC live normal fulfilled lives using just glasses or one of the many types of contact lenses to get extremely good vision. I get 6/6 (20/20) vision with lenses, but without I can not even see the eye chart!

I have looked into C3R myself, but because I was having trouble with lenses which was sorted using eye drops and a change in diet. Personally my view is that looking into such treatment is worth while but the more conventional treatments should be given a go first. This is because as mentioned earlier you will still need sight correction with glasses or contact lenses which you might already have.

Hope this helps.

Regards

Gareth

Hi Gareth,

Thanks very much for your reply. I'm really concerned at the moment and have frightened myself by reading and seeing various websites. I was given glasses a month ago, but they only slightly improve my vision. Do you have it in both eyes and if so, did it start at different times?

I've read it may be less severe in the older age group, rather than the 20s. I'm 33. Do you think this might be the case?

I think the C3 is worth it if it stops progression. I have also enquired with Optimax regarding INTACS. I swim competitivel, so contact lenses would be awkward.

Thanks again
Louise

Hi Louise,

My KC was diagnosed when I was 17 after a particularly visceous game of rugby where I left with two extremely swollen and black eyes. I have had it for 20 years now. For me it was quite aggressive which menat I had to give up motor racing within a year of strating. I had my frist graft as soon as my A levels ended and my second a year later. Only about 10% of people with KC ever get to this point so what Iw ent through was quite unusual. This was because 20 years ago, there was not a contact lens that would stay in my eye.

In 2004 again within a year after starting to race comeptitivly, while in Germany I found the night race extremely ahrd and on my return found I had KC in my right eye in the cornea the graft was attached to. It hads now been stabel for 2 years and being in my late 30's I hope it stays that way.

I swim with contact lenses after finding some great goggles for water sports and they surfice while swimming. I am at work at the moment and the filth filter prevents me from looking up the goggles I use, why only IT knows, but I will post the link tonight.

Due to the irregular astigamtism we have, the benefit from glasses as you have found is limited. COntact lenses give us a proper curvature of the cornea and tears filling in all th iregularities between the lens and the cornea. They are uncomfortable to wear but with minor adjustments to lenses or work/home environment I have pain free lens wear and the same quality of life. There are a small range of soft lenses for KC too.

KC is evry unpredicatable and I have no reason to contradict what you have read. From my personal experience the progression of KC is slower in later years, as I said mine has been satble for over 2 years now.

Even without lenses I found swimming fine, I found the roped off lanes easier because I could see the edge of the lane and go in a straight line. So I knew where the end was I used to count the number of white stripes I passed. The pool I go to rope off a few lanes and they alternate red and white so I had an indication of when I was nearing the end. As to how useful this would be when competing I think only yopu will be able to do that

Since joining this group and asking the silliest of questions I have since learnt how to do all the things I could do before the KC set in so vision and limited vision cause no problems at all in my life. The only thing I can not do is race cars as the lenses I have are banned under MSA and FIA regualtions so I compete in competitions on how clean is my car. Have a look in the hit Chat area where I have boasted about my sucess I wear my lenses to get to the competition, take them out, clean the car and wait for the result. Then put my lenses in again so I can drive home.

Ask loads of questions even if you think they are daft, when you are down have a good old moan and you will find one of us here to hopefully offer a helping hand or a shoulder to cry on plus we share the good times too.

Hi Gareth,

I'm at work to and climbing the walls. I can't get it out of my head.
So the injury triggered your condition? I'm wondering if I started mine as I really have rubbed them over the years.You sound like you've had a rough time and well done on your racing achievements.

It was only on the 4th visit this year to the Optician that they said the cornea was thinning. I saw an eye specialist in August and he said my eyes were fine, so the deterioration seems to have been quick, which I find very worrying.

Did your grafts improve vision or just the shape of your eye? How long did it take to get some vision back?
Thanks for your replies.

Louise

Louise,

It is possible that a blow to the head did agrevate the condition, howver the cause us unknown. I go with th genetics theory that a group of recessive genes need to come to gether to give us a predisposition to KC which is the triggered by one or a combination of things such as eye rubbing, trauma, environmental, hormonal etc.

The main aim of a graft is to reshape the eye to privde a surface which is easier to correct just like the less invasive C3R, mini-ARK, intacs etc. The only difference is that grafts can not be undone so are purely an absolute last resort. Within 12 months I had good vision with glasses which is what most people get. Good vision with glasses or contact lenses, I was lucky enough to have about 5 - 7 years excellent vision that needed no correction.

Graft recovery can be from 6 - 24 months so is a long slow process. This is until good sight is achieved, people are back working between 2 - 6 weeks post graft.

Hello again,

Does anyone ever get good vision without glasses or contacts, after grafts?

I have just spoken to David Jory in London. He seems to think C3R, at the moment has stopped progression in patients. So impulsively I'm going to go for an assessment on Friday and find out more.

Do you still have to have regular hospital check ups?

Thanks again for sparing the time to reply to me.
Louise

Yes some people do get good vision without glasses or contacts post graft however ony a relatively small number.

The data I have on C3R has shown that on the patients it was tried on KC progression did stop or and improvement in the condition was seen. My only critisism of all the research that I have seen is that patients were carefully selected. There was no indication if this screening would be applied to patients outside of any of these studdies.

Once you have had your consultation, please let us know how you got on. From experience write loads of questions and take time to write them down so if you get information overload you have something to refer back to and any choice you make is an informed one. It is very easy to let your heart over rule your rational thinking processes.

Louise

It would be good to see how you get on as its always nice to read other peoples experiences.

If I can help i anyway let me know or fire away any other questions.

All I can say with regards to C3R, is that it bought me 15 months of time...for my grafted eye to heal and me to now rely on that totally.

Was it worth it for me? 100%!!

Hello Jayuk,

Thanks for your email. Is your C3R eye still OK, or has it deteriorated?

Did you have it scraped and was it painful afterwards at all? They've told me it will be afterwards.

Louise