UK Keratoconus Self-Help and Support Association

This is my first post on this forum so please excuse any mistakes etc. I am after some advice, i have searched the web and read forum posts so i'm getting further forward on my understanding but i would like your advice. i have KC and have known about it since 1999 ish. i was put forward to the nhs for contacts but after 3 years and still no contacts that fitted i went private, the nhs was bad news ( not their fault I'm sure) but i would get an appointment lets say January they would look at my eyes order contacts and ask me to book a follow up appointment to check everything out, my contacts arrive , they don't fit, next available appointment end of March, the procedure was a 3/4 month cycle so very slow and all the time my cornea was getting damaged, scratched etc from misfitting contacts, so i went private and after all the 'faff on ' with the nhs i spent a lot of money and now still wear glasses!!! I'm my own worst enemy( finaancially) i think. my last eye test was 2007 vision express and i still have the glasses but i now seem to be rolling my eyes a lot , thats not a pun,I don't know why? my vision seems not the best and i was thinking of new glasses but seeing as though back in 1999 they said i had KC i have found this group and also accuvision offering Topography Guided Custom Ablation Treatment for Keratoconus (T-CAT) and the C3-r treatment from accuvision. i phoned up and booked in for next week for a meeting 'free consultation!!!!!!!!! costing 150 pounds, because i have KC???? 1, is this normal and 2 although i have read about the c3-r what are your thoughts on getting the T-CAT alongside it. if i can get away with glasses do i need this?

i hate wearing glasses and contacts just seem very hassle orientated with no real results for me
mind you when i did have contacts it was like going from an old tv to hd (but contacts hurt and by 5pm my vision was goosed with the contacts even when i took them out and put glasses on i still couldn't see. what would you do in my circumstances tcat, c3-r, new glasses and risk increased KC? HEEEELLLLLLLLLLLPPPPPPPPPPPPPPPP

Hi Imernater and welcome to the forum,
Lots of questions there, which I hope other forum members will give their take on too. The good thing is that it sounds as though your KC is progressing very slowly if you're still managing with glasses more than 10 years since diagnosis. And, as you've been finding, there are more options for KC since you were diagnosed. Contact lens technology has also improved a lot over recent years, with many more types of lens to choose from (though waiting times between appointments on the NHS are still the same, unfortunately!) So it might also be worth investigating whether there are now lenses which you'd get on with much better. As for crosslinking, as I'm sure you've read, on its own it's designed to stop progression rather than improve vision (although some people do also get a bit of improvement). TCAT reshapes the cornea so potentially does improve the vision. It's a very new procedure so there's not a lot of information about it and nothing on long term effects.
And not all corneas are suitable for crosslinking and/or TCAT, hence the need for a preliminary consultation and examination of your eyes. But you're the only one who can decide what's right for you and what you feel comfortable with after weighing up all the pros and cons of different options. If you haven't already joined our mailing list, do e-mail your postal address to anne@keratoconus-group.org.uk if you'd like our information booklet on KC and the DVD of our 2009 conference which covered the current options for the condition.
All the best
Anne

Hi

I'm afraid I know nothing about T-CAT, but a little about C3-R. I guess I'm in a similar boat to you ... I felt I had no choice but to go down the private route for various reasons. I've had KC for just over 10 years. I was led to believe by my optician that it had stopped two years ago, but became aware of vision changes over the past 6 months or so. I'm a graphic designer and so work is becoming quite difficult at times. Went to my optician again and they were hopeless (even after being told about the condition) – sold me a £325 pair of glasses that were no use whatsoever. After a bit of homework (my twin sister has KC and has 2 grafts and so I already knew the Centre for Sight in East Grinstead and London) I decided to shell out the money that I was going to pay for the glasses and get a consultation. I found the tests to be thorough (took 3 hours) and everyone seemed to know what they were doing and what they were talking about (costs vary according to number and type of tests, but I paid around £275). I was advised to get crosslinking (C3-R) in both eyes (booked for next week!!!) followed by a wedge resection in one eye. No two patients are the same though.

I think the key is to be aware that there are various centres around offering various procedures and services. Also, It's worth doing some homework to find a specialist centre, find out what tests will be carried out, how long will the tests tasks, etc (no doubt costs will vary). Lastly, try and get some recommendations (what better place than this forum?!). Like most people, I simply cannot afford to shell out on procedures that won't work, I don't need, etc etc and so I was more concerned with finding 'the right place'. However, I'm feeling (relatively!) at ease about things because of that.

Best of luck.

Caroline.