UK Keratoconus Self-Help and Support Association

I recenly posted a thread about not being able to work with my contact lenses. It's been 3 months now of weekly teach lesson's and I'm still no nearer in getting them in my eye, let alone getting them to sit on my cornea!! Had another teach yesterday (Sat) and after a couple of attempts my eyes just shut completely. The optomotrist (think she was losing her paitence and I don't blame her for that. I wouldn't want to have to try and get someone like me to get their lenses in!) jsut said I need to try touching the white's of my eyes and then come back and try again. I just don't know how to move on and get this whole lesne thing out to bed.

It's jsut so frustrating. I know I need to have them and I don't want my vision to get any worse than it is (right eye is already pretty bad) but I just can't see myself ever being comfortable with them. I mean, I just can;t see myself spending two housr to get a lens in then another hour getting it in place.........

Is this unique to me or does everyone tkae this long to get it right?

London exile:
First, wearing contact lenses will not stop , nor slow down, the progress of the KC. Don't let anyone tell you to the contrary!
SOmetimes KC stops progressing of its own accord, sometimes it stops for a while and seems to have stabilised, then takes off again later.
Lenses don't change that.
Secondly, what happens if someone else puts the lenses in for you? - for example, your optician.
Will they go in then? Can you see well out of them? Better than in glasses, say?
And can you wear them for a reasonable period without too much discomfort if someone else has put them in for you and got them in right?
If the answer to several of these questions is NO, then I'd suggest a rethink. There is little point in struggling to wear contact lenses if the advantages in terms of better vision aren't worth the effort, or th epain is too much.
It might be, though, that a different sort of contact lens might be better - or even that you'd do better sticking to glasses at least for a while, if your vision is OK in them.
On the other hand, maybe if someone has got the lenses in OK for you, then the vision is good and the comfort is oK (or at least, something you can start to build up wearing time from).
In this laater case - is there anyone else who can help? - even, you could be taught to get them in for you?
When I first got lenses, I couldn't put them in for love nor money - and the optom. had to teach my mum to put them in and take them out for me before I could take them home!
TO be fair......... I was 14 at the time.
This arrangement (my mum putting the lenses in and taking them out for me) lasted until the following Saturday, when my mum was in the batha nd Dr Who starting in 10 minutes.
Either way, it sounds as if your optician is not the mst sympathetic in the world. Is this person a KC specialist???
Rosemary

When I was first diagnosed i had to wear hard lenses (York Hospital - 1999. I hated them. I could not wear them and they made my eye hurt sooo much. In the end I said my right eye was okay and I'll let that do the work. By 2004 headaches and vision that was far from good meant I knew I had to go back. By this time I was living in Doncaster and they said I could try soft lenses with a hard inner. Getting them in has been alot easier. i did the thing of getting used to putting my finger on my eye and I also developed a technique I was comfortable suing to put them in. I did not do the thing of two finger seperating the eye lidas I had been taught but, I pulled down the bottom eye lid and slid the lens onto the eye and then moved it into place. This works for me....Don't take it to heart. I remember getting really frsutrated and that made it worse. When I came back to wearing them, it took time and like anything practice was the key.

Thanks for the replies..........

I'm not sure that it is now just a case of gettigng used to them. My eyes, will just close complelety after about 10 minutes trying to get them in. Thats before I can even think about trying to get them into place. And yes thay are soooooooo painful, that when on the odd occasion I have go them into my eyes the pain in moving them is just too much. And if I can get them in place, one lesne (normally the left) just "slides" off the cornea so i have to repeat the movment of the lens again.

All in all I just can't see wherre I go from here. would CXL be of anybenefit to me and I've recently heard about somehting called Kerasoft lenses. Does anyone know more about these and woulf they be of any use to me?

Hi.
It certainly sounds as if asking about alternative types of lenses wouldn't be a bad idea. Kerasoft is one possibility..... ther are many type of lenses now,
CXL can slow or halt the progression of KC, though it won't necessarily "cure" it, in the sense you'd quite probably still need glasses and/r contact lenses.
I haven't seen your eyes down one of those machines the optoms use - and am not qualified as Dr or optom - so can't tell definitely whether it would be suitable for you. But if you have fairly recently diagnosed, not yet too severe, but maybe progressing, KC, then it is certainly something it may be worth asking you optom/hospital consultant about.
SOme people do have problems initially with corneal lenses and then get used to them and they're OK - but you do sound to be having an unusually large amount of problems.
Rosemary

Well it's been a while and have given up on the RGP lenses at least for the short term. Have been fitted for kerasoft 3 Lenses which, have worked a charm for me. Can get them in and out with ease. And there is no, or at least a mimimum, of the sensation that there is a lens in my eye.

So whats the vision like? Well it's only bbeen the first fitting but even with the fitting set my vision was far far better. I've since been told that I can probably get away with a normal soft lesne in my left eye, but the right eye is pretty much moderate to advanced in terms of KC, but the lens has made a great difference.

So, my observations blurry though they are are thus; Yes I'm going to need lenses in the short to medium term it's going to be the Kerasoft lens. After that and looking long term, i'll probably have to re-visit RGP lenses. At least then it won't be an unknown area for me and the confidence I'll get form using the soft lenses will no doubt stand me in good stead. I'm also going to investigate th possibility of Cross linking - I'm not to sure about the intacs wiht or without the CCL as I've heard some negative stories about them. Also witht eh jope that there will be some as yet undiscovered medical advance that will reverse KC or even cure it. I'm sure that will happen but it's when it will happen.

LondonExile

Well done, and thank you for sharing your experience with Kerasoft 3. there will be many others who are struggling with RHP lenses, and it is good always to be reminded that there are other options available.

All the best

Andrew