UK Keratoconus Self-Help and Support Association

hi

My contact lens specialist at local hospital cannot do much for me and referred me to the consultant who in turn has referred me to leeds st james Mr Morrell re CXL. Had my prescription right eye is -19.00 and left is -14.50. go again in 2 weeks to see what he says as only had a topography done then.

However my contact lenses are still troublng me 5 hr wear even with hycosan eye drops, tried others. He has only tried rgp.

my question is could i go elsewhere to see if other lenses ie piggybacks or schlerals would help me.

I do have an intolerance to lenses.

Michelle

Michelle

I am puzzled: why did your own hospital optometrist not try other options? Sclerals were far more comfortable for me than RGP corneals.

If you are not satisfied with the advice from one optometrist, ask for a second opinion. Ask about scleral lenses, and ask about kerasoft, piggy back lenses, hybrid lenses and the rest.

All the best

Andrew

Hi Michelle,
There certainly are other lens options that can be tried.
AIUI, the point of CXL is to slow down the progression of the KC - ie. so your eye stays the same shape and doesn't get more pointed. It might make the KC slightly better but won't cure it. THe chances are you'll still need lenses (or possibly specs) to correct the vision after the CXL.
On the other hand, if the CXL makes the cornea a bit thicker it may e less sensitive and have fewer problems with lenses.
If your hospital can only work with corneal lenses (about 8mm diameter, just covering the iris) then certainly do ask to go elsewhere to investigate other options. There are several types these days - some a combination of soft and RGP materials, even some soft lens options, and sclerals, which are lenses made of the RGP (= rigid gas permeable) material but bigger, about 21-24 mm diameter. Then there's pggybacking, which is wearing a hard (RGP) lens with an unpowered soft lens underneath to act as a cushion.
Good luck.
Rosemary

thanks everyone.

My local hospital get someone in from leeds(their own practice) but has not suggested any other lenses just rgp so am going to look round as its driving me up the wall. Even with hycosan.

I go on the 26 sept re CXL again to go over the topography.

Michelle

In your place I would ask the hospital optometrist whether another sort of lens might not be better. The list of available lenses and lens materials is sufficiently long to give the fitter a reasonable chance of managing to find the right combination to suit you.

Andrew

Hi Guys

been to leeds again and they said cxl would not be suitable and have put me on waiting list for graft because of my high prescription.

One question is because i am intolerant to rgps at the mo should i still consider asking about other types of lenses before my graft as dont kno how long i can cope with these.

Michelle,

If you are intolerant to rigid lenses then you could try the KeraSoft3. I have successfully fitted higher prescriptions than yours with this lens and it is more comfortable than the ones you have been trying. Do ask about it and it is worth trying before grafting because in the cases I mentioned, it was found they did not need to go to graft.

As a matter of curiosity - why was CXL not suitable did they say?

Lynn

Yes, definitely ask about other types of lenses.
Even if you don't get on with the RGP corneal size lenses (8mm) diameter, you might be one of those may get on well with sclerals - they are made of the same rigid gas permeable polymers but are bigger, so they rest on the less-sensitive whites of the eye and arch clear over the corneas with just a reservoir of tears behind between the lesn and your eye. SO they are more comfortable, for some of us, and can be made to fit over very steep cones. Also they don't fall, flick or blow out nor wash out when you go swimming.
There are many other possibilities - combination hard/soft lenses, limbic lenses, mini sclerals, piggybacking - that is, wearing your RGP lens on top of an unpowered soft lenses that acts like a cushion (you can do this with either the small corneal or big scleral rgp lenses).
SOme of these works well for some, and others for other people. But there are plenty of possibilities and yo should bbe being pushed into something as drastic and irreversible as transplant surgery after only being tired with a standard corneal lens.
Good luck!
Rosemary