UK Keratoconus Self-Help and Support Association

I've recently started trying RGP lenses to try and achieve a better standard of vision, the improvement in my bad eye is amazing; going from nearly no vision to perfectly useable. I know that RGP lenses are supposed to move a little bit rather than just sitting there but one of them seems to move a huge amount when I blink, moving up to the point where I can see one edge of the lens then sliding back down again, I estimate the distance to be about a millimetre. The other one doesn't move noticeably. Is this normal or should I be asking them to refit them? I've read a lot about RGP lenses causing scarring so am planning to try and get the KerraSoft lenses fitted but in the mean time am concerned that this lens moving so much might be bad for my eye.

Cheers,

Ben

Ben

Welcome to the forum.

It is the movement of the lens that enables it to pump new tears into the gap between the lens and your eye, and that, in turn, adds to the oxygenation of the cornea. If you really think that there is too much movement, then it may be that the fit is too loose. Ask your optometrist how it looks through the slit lamp.

Optometrists know that fitting people with keratoconus is more of an art than a science, and they do like the patient to be involved in the process. Never hesitate to raise a question about the comfort of your fit with the optometrist.

Every good wish.

Andrew

I agree with Andrew. Minor adjustments are often required in ALL RGP fittings and even more likely in ther case of a KC fitting. I would however say not to wait too long before returning as it is easier to exchange lenses within a short period of time of the original fitting.

Yes RGP's 'lift' slightly off the eye which is why it's so much easier for grit to get under it and cause ****** moments! They also don't move as quickly with the eye there is a slight time lag between the eye moving and lens moving

Thanks v much for all your replies, I've got an appointment for later this week, reading what everyone has said I'm not sure if one's too loose or the other too tight but one definitely moves hugely more than the other.

Wearing the lenses has really shown me how bad my vision had got with just glasses, I really don't like taking them out now! Starting to wonder if I should be considering C3R since my left eye is already too far gone for it and I'm pretty wary of ending up totally lens dependent.

there might not be any avoidance of lenses - even after grafts people typically need lenses

Sorry my bad I meant I'm trying to avoid not having any useful vision at all without lenses. At the moment my uncorrected vision is good enough to walk around although reading etc isn't much of an option. The line of work I'm in means I'm likely to be traveling a lot and I'm nervous of being totally reliant on lenses in case they get lost or damaged while I'm away if that kinda makes sense.

i agree that you should have the fit checked. there are lots of small adjustments that can make a huge difference to your comfort and wearability.
i can't answer about crosslinking, but i know i would probably have had it done if i could (KC too advanced)
i travel a bit and before my graft was entirely lens dependant... couldn't pour myself a glass of water without them... i always took a spare pair of RGP lenses along (even though they were an old pair that didn't fit perfectly)

Just to get some balance into this whole Crosslinking debate, let me say that I would not countenance it for myself, nor would I recommend it for my son (who also has keratoconus). For people who have had the procedure and who have found it helpful, I wish them well. For those who have decided to have it done, they also have my best wishes. We each have to make our own decisions about the treatment we accept.

There was a time when I'd have said, with Melissa, that I would have had CXL if it were available.

Andrew

I'm still not sure, on the one hand it looks very promising, it seems to have a good track record in the countries that have been doing it for a while but on the other hand I'm finding it hard to actually get my hands on any of the proper published papers to do my own research, I can only find other peoples summaries. If you don't mind me asking Andrew why would you not personally choose it?