Inferotemporal Keratoconus

[GraemeH]

Hello Adrian,

your variety of KC sounds very similar to mine. My cones are low down, the left one heading to the LH side too. However they are not so much cones as bulges, as they cover a very wide area, almost the entire width of the cornea.

I tried RoseK lenses first - they were useless. They simply wouldn't stay in position and were just too small to look through.
I'm currently trialling Intra-limbal lenses. These are bigger and stay in place. Comfort-wise they are an improvement but I'm always aware of them when they're in. The big problem I have with any lenses (or specs for that matter) is getting the myopia & astigmatism components right. Because the cone covers such a wide area, it means that cornea is thinner over a much wider area too, which makes it very vulnerable to further distortions. This, in my experience, has 2 effects:

1. Bad eyesight days for no readily apparent reason. This is due to a rapidly changing prescription, and specs/lenses simply can't keep up.
2. The corneal shape is actually changed by the process of lens fitting, therefore making it well nigh impossible to get a stable prescription reading.

If your eyes are like mine, you'll need to be *very* patient with the lens fitting process. 18 months since beginning I'm no nearer getting a set of lenses that are even remotely wearable and can help me see better than with specs.
In the meantime I'm struggling along with slowly deteriorating spec-assisted vision. I know exactly what you mean with PC monitors, sometimes it gets very hard work, especially after a long day. I've also had to stop driving at night, I'm a year into self-imposed night-time driving ban.

Still, I can get by, and do my job, even without the lenses for the time being, so mustn't grumble (too loudly anyway!!!)

Best of luck
Graeme

[Louise]

It's going on 2 1/2 years that I've been trialling lenses. I still wear my glasses for work but it's getting to the point where I'm really struggling.
The main problem I had been having with RGP lenses was that every set seemed to really irritate my left eye (where the KC is worse) It's still the case but I am getting more and more used to it. The problem now is the hospital keep supplying me with lenses that i can "see". My vision is far superior with them in, however the peripheral vision is blurred. So the process is ongoing.

What I am wondering is do you ever get completely used to RGP's wherein you can't actually feel them at all? So far I am always aware that I have my lenses in.

[GarethB]

Louise,

It has taken me about 18 month to get to a point I can happily work without feeling my lenses.

This is down to the fact I need lubricating eye drops due to poor trear production and keep well hydrated. I drink 2 litres of water per day in addition to the normal drinks.

Without this I am lucky to get 2 hours lens wear. Initially the ey drops had to be topped up every 2 hours and now after three months of that I was able to back off to using the drops just in the morning and the evening.

I do have a sklight loss in peripheral vision in my right eye as the cone is pointing inwards so the lens sits pointing inwards too. Still have enough peripheral vision to drive though.

Without lenses, my right eye meets the requirments to be registerd legaly blind whichI nearly was at Christmas until we go the lens to work. Left eye is not so bad, just leaves me partially sighted as glasses are usless for that eye too.

Hope some of my waffle helps.

[Louise]

Gareth,

That's great thanks. I think the problem has gone on for so long due to one optician telling me I wasn't to use lubricating eye drops, then a year later I checked with the Consultant and he told me to use them as and when I needed too.

I don't think I help the situation by not blinking properly (apparently I don't actually close my eyes fully when I blink ) but it is encouraging to hear that someone with KC has managed to get to a point where RGP's can be worn without feeling them.

Thanks

[GarethB]

Loise,

Andrew is another that does not close his eyes properly when he blinks and he now makes a conceous effort to blink extra hard to ensure his eyelids touch.

So again you are not alone.

[Tina Sweetland]

How weird? I alos don't blink fully and have build up at 9pm and 3pm on the eyes. I keep getting nagged to blink fully...but it's really hard to do!

[Louise]

I got told at the hospital to "practice blinking" and whenever my eyes started to feel tired or dry to blink hard.

Can you imagine sitting on the bus or something doing these 'big blinks'?