UK Keratoconus Self-Help and Support Association

HI

I have read through some of the discussion threads already about Intacs, but now wish to ask some questions if I may.

I am writing on behalf of my wife who has suffered Keratoconus for many years. She had a fitting for hard contact lenses back in 2001, but she could not support them. Since then she has resorted to glasses only and her eyesight is getting worse.

It brought it home to use when she failed the eyetest for a US driving licence during a what was supposed to be at least a 3 year stay for my work. This was cut short as I could not leave her to rely on taxis all the time and she was becoming a prisoner of our own home.

Whilst we were in the US, she was told that she would be a good candidate for Intacs, but at $12,000 for both eyes, this was out of our price range.

I'm not saying that this is the only solution, but it appeared to be a good alternative to her current situation.

I am enquiring to find out if she can get this done on the NHS - previous threads seem to indicate this, but I am not sure. How is the best way to go about getting this procedure offered?

If we had to go private, any recommendations and anywhere cheaper than the 'then' $10,000 (this was quoted only last years)

thanks for any info offered.

regards

Garry

Hi Gary

Welcome to the forum.

First things first, you need to get your GP or local optician to refer your wife to the hospital so she is in the hospital system. They will then be able to advice on the different treatment options, intacs, CXL, intacs with CXL and so on. There are sloa range of contact lenses so just because your wife did not get on with one type of RGP lens, there may well be a differnt type of RGP lens that is acceptable.

Intacs are on the NHS but as yet CXL is not, but only a matter of time before NICE look at the trials some of the NHS hospitals are running, so if you are lucky enough to be in one of these areas your wife might be able to get CXL to.

As I said above, she needs to get into the hospital system first and see a consultant on the NHS.

Hello neojynx

Welcome to the forum.

RGP corneal lenses are, as Gareth has suggested, not the only lenses available for keratoconus. Even if INTACS does not seem a good way forward there are other lenses to try.

Stay in touch.

Andrew

HI there...

Its hard to advise on intacs just through this forum and without seeing you. They are suitable for some forms of keratoconu,s but not all - it can depend on corneal thickness. There are other contact lens options apart from RGP - namely: piggy backing (RGP on top of soft lenses), specialised soft lenses; sclerals; SoClear (a semi scleral); softperm/synergyse (hybrid between soft and RGP).

If your wife just want a surgical option, then intacs with or without Corneal Cross linking may be a good way to go but as others have said, you would need to see an ophthalmologist to find out how advanced your condition is.

If you wish to go privately, that would be quicker to get an initial consultation and you can get surgery more quickly as well - some surgeries are not available yet on the NHS. On the other hand, although the path is slower on the NHS, it is free!

Lynn