UK Keratoconus Self-Help and Support Association

Hello

I'm new to the Forum. I've been a KC sufferer for a long time but have always worn glasses. I tried RGP lenses a few years ago but could not bear them hence my interest in intacs.

I'd like to know if there are hospitals in Scotland performing the intacs procedure. I live on the west coast in Ayrshire.

Thanks very much.

Zeitgeist

Intacts wont stop the need for wearing contact lenses. They just flatten the cornea slightly to make lens fitting slightly easier, though most competant fitters could overcome steeper corneas, and intacts improve your vision by a line or two, if that. If you have just tried the small corneal rgps and not been able to get on with them there are many other lenses available to keratoconics that you can try. I would recommend you have a word with your cl fitter and make sure you have tried what ever is out there before you go through any surgical procedure. I couldnt tolerate corneal rgps at all and went onto softperms for a year or so which were a lot more comfortable.

Hi Asif

Thanks for your response. I've read that SoftPerm lenses can lead to corneal neovascularisation. How has it been in your case?

I've heard of piggyback lenses but I don't know of anyone who wears them and who could give me some feedback. What do you know about them and how much do they cost?

Thanks

Zeitgeist

there is a risk of neovasc with softperms as the oxygen permeability is low. if you do get any than you may not be able to have a graft. thing is dont wear the lens for excessively long periods so the cornea is not depreived from oxygen as much. piggybacks didnt help me much as the comfort was slightly better but still uncomfortable and the vision wasnt very good. with regards to prices i wouldnt now as mine are all free as long as im still in full time education.

here are some lenses you could try other than the small corneal rgps, i would do them in the following order:
kerasoft - good for mild KC
softperms - comfortable but only availible in limited sizes
piggybacks - works for some
intra-limbal - large diameter rgps, more confortable than smaller rgps
flex edge - made by jacl, they are similar to softperms, but are made totally from rgp materials not soft skirt fused to a rgp but flexible edge tends to stick to eye making it immobile
scleral - takes a while to get used to, get these fitted by someone who has a lot of experience in these

these are the alternative lenses i have tried other than the smaller rgps/rose k. there are a few others available i'll let you know once i do a quick search on them.

when you have tried all lenses available to you then i would say you should consider surgical procedures. c3r and intacts can be done but they are relatively new especially c3r and i wouldnt personally do either until i see better research on them. however these cant guarantee significant improvements and you will still most likely end up wearing lenses after.

with regards to a corneal graft its probably a final resort. dalk has less risk of rejection. however this is not going to guarantee you wont have to wear lenses after as you may well have residual post graft astigmatism that glasses may not fully correct but your uncorrected vision usualy improves a fair amount

Thanks again. I'll run these by my optometrist when I go for my appointment.

My experience with CL wasn't the best in terms of comfort but they did improve my vision significantly.

My other concern is the possiblility of the lenses popping out whilst I'm driving. This acually happened to me but fortunately, I wasn't driving then.

Zeitgeist

that has also happened to me but i was driving. when i looked in a certain gaze and blinked the lens would pop out, can be due to a poor fitting lens.