UK Keratoconus Self-Help and Support Association

hello i,m new to this forum
my doctor told me that i have keratoconus in my right eye
but it,s in the 3/4 level unfortunately
my left eye is normal with little myopia
anyway i want to ask about mini ark
because i searched in the internet about this procedure and i can,t find a lot of information about it
are the patients who do mini ark healed from keratoconus or they didn,t get any better
is it available in the uk and if not
why if it is a good procedure
can i have this procedure or it,s too late
and where i can find casualty units in the uk which do mini ark if it,s available

Hi Jhon and welcome to the forum!
I don't think you'll find anywhere in the UK that does mini ark - presumably because there's a lot of controversy about this treatment and whether it's helpful for KC.
And I'm afraid there aren't any options that 'cure' keratoconus. But most people get reasonable vision with one of the variety of contact lenses now available for KC. And there are other options such as Intacs (corneal rings to flatten the cornea) and collagen crosslinking to stop KC progressing further which may be suitable for some people. And corneal transplants if contact lenses can no longer correct the vision - though only around 1 in 10 of people with KC ever get to that stage.
What has your specialist recommended for you?
Anne

my specialist after he studied my situation he said that i can,t put corneal rings
and my only option left is contact lenses
and after the search in the internet i find mini ark
anyway i fell so angry from my other specialist
this other specialist was examed me from five years ago(2005) and he didn,t tell me that i have
keratoconus, he said that i have astigmatism and i need glasses
but i didn,t put the glasses that time because it caused headache when i study in colleage
from a period i go to him to check my eye and he said also that i have astigmatism and i need glasses with a higher degree
but i haven,t been satisfied with his conclusion
so i go to another specialist and he told me that i have keratoconus
if i know from the first time that i have keratoconus
i think i can do early procedure

so now i think i have two option either i put contact lenses which i find in this forum that it accelerates the keratoconus
or go to italy and do mini ark which i,m afraid from it

jhon

Welcome to the forum. I am afraid that Anne is right; there was a great deal of controversy some years ago about the efficacy of mini ark as a way of managing keratoconus. So far as I am aware, there is nowhere in the UK that offers this treatment.

Please do not dismiss the idea of wearing contact lenses; these are an effective way of giving the person with KC good sight, and in the vast majority of cases they are able to manage the condition throughout the wearer's life.

Andrew

today i go to the third specialist and he told me is the right solution for my situation
is to put icl
so is there anyone who tried this soulation
which is the best the icl or you advise me to put contacts instead
please share your opinion

Hi Jhon
One of the specialists who spoke at last year's KC Group conference talked about icl (intraocular lenses). These have only very recently started being used for KC and from what he said, they are only useful when the KC is stable. If your KC continues to progress, the icl would quickly become useless.
From what you say, you haven't tried contact lenses at all. They work well for the majority of people with KC and there are now a lot of different contact lens designed for KC. There are always risks with any invasive surgical option so it's always worth trying lenses before thinking about surgery. Our last newsletter included an article on all the different lens options. If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you a copy, plus other info on KC.
Anne

thank you for your help,
i,ll send my email to anne@keratoconus-group.org.uk
about the contacts as i read ,most of people don,t stand to put it long time and in the end
they get tired of contacts

anyway which contacts do most of patients use first
is it kerasoft 3

Most people start with RGP lenses of which there are many different designs. What you will see on theis KC site and any other round the world are the more extreme cases of KC (i.e. those in need of help) so you rarely see people saying how well they are doing with lenses.

There are also a range of soft lenses such as the Kerasoft 3, but I have the latest type of Kerasoft lens, the Kerasoft IC which alows for more chages to fit the eye. I was on the Kerasoft 3 for 6 months before moving to the Kerasoft IC which I've had for the past 12 months. The Kerasoft 3 gave the same performance as the RGP lenses I used to have but the Kerasoft IC are more comfortable again and I see even better than with an RGP lens. I get 6/4 vision in both eyes and wear them all my waking hours and an easily wear them for 19 hours on consecutive days. Forst time I have gone 18 months with no bad eyedays and counting. With RGP lenses I could only wear them conmfortably for 4 hours but would push it to 8 hours but only week days and I would still have bad eye days every couple of months resulting in a trip to eye casualty.

You will see a post abouit SoClear lenses where some have found them to be no help while others find them really good. It is very much a case of try a lens and see if it works for you. If not you move to the next lens until you find something that works.