Worried after eye test - should I be?

[magictime]

Hi

I'm 34 and have had KC for around 15 years, but it's only ever really affected one eye. (It's there *mildly* in my right eye, but only severe in my left.)

Last time I saw an eye specialist - a few years back - my KC didn't seem to be getting any worse, and the suggestion seemed to be that it had probably stabilised after 10 years of constant deterioration.

I've tried contacts more than once, but absolutely hated them... the constant soreness, people telling me I looked like a nutter cos I was scowling and squinting so much! So I've always slipped back into wearing glasses and just putting up with the 'halos' around things (my main visual symptom).

Anyway, I've just seen an optometrist and apparently there's been a 4-step increase in astigmatism in my right eye since my last test (3 years ago). She casually agreed that might be a sign that the KC in that eye is getting going.

The thing is, if that eye got anything like as bad as my left, I'd have very poor vision indeed.

What does everyone think? Have I just been kidding myself I'd be OK from here on in with just my specs? Should I be preparing myself for another 10 years of deteriorating vision, this time with no 'good eye' to help me out? Or is my optometrist too quick to suggest that increase in astigmatism may be sign of worsening KC?

I know I need to see a specialist again, but meanwhile I'd be grateful for any advice... it's been 5 years or so since I've really worried about lenses, grafts etc. and I'm panicking now that it's all on the horizon again...

Many thanks

[Andrew MacLean]

Welcome to the forum

1 DON'T PANIC

Even if your keratoconus is developing in your 'good' eye, there may still be help at hand. many people who have struggled with one type of lens have found that they get comfortable wear and good wear time from another!

Yes, you probably do need to see your ophthalmologist again, and you may need to try lenses in both eyes, but new types of lens and lens materials mean that there is a far greater chance that you will have a successful fitting.

All the best; do let us know how you get on.

Andrew

[magictime]

Thanks for that Andrew. I just have visions of myself squinting red-eyed at my computer screen through those damned RGP lenses... good to know there are options.

I know 'don't panic' is the best advice. I think my problem is that I did all this worrying years ago and had managed to push it all to the back of my mind - and now it's all come flooding back!

[Andrew MacLean]

I guess that most of us can understand exactly what you are going through, but take heart!

All the best

Andrew

[Lizb]

I was in similar situation to you, one good eye coping in specs (right eye no sign of KC) so wasnt too bothered about contact lenses. I gave up on contacts about 6 years ago - did not get on with them at all.

I tried CL again last year and for 6 months was sucessfully wearing a new set of lenses (that werent available 5-6 years ago). Things have changed for me personally, so am currently trying a different type of lens.

Dont give up hope - there are alternatives out that compared with 5years ago, i now prefer to wear CL as can see clearly (compared with glasses) when my eyes allow, but i also suffer with dry eye which limits my wear time.

[rosemary johnson]

Hi, and welcome.
Yes, it could be the KC coming on - it could just be your eye changing over time. But an extra 4 on the cylinder reading sounds quite a bit.
I'd agree with seeing the specialist.
I'll also second the notion that you might find new types of contact lenses that weren't available, or that no-one suggested to you, that work better for you.
There's also a new procedure becoming available called CXL (collagen cross-linking). It's a surgical procedure that is intended to slow down or halt the progression of the KC.
THere is more info about this on the home page of this site. It is a fairly new treatment still under "trial" in the NHS and we hope will be more widely available soon.
Rosemary

[Lizb]

I am looking at having the CXL done privately at the moment (in particular for the right eye), as i want the option to wear glasses or CL. not being reliant on CL only. I have early stages of KC in the right eye, more advanced in the left.

[Andrew MacLean]

CXL does not promise to remove the need for contact lenses. It is a common misapprehension that people never need lenses after CXL, but I am afraid that this is a case of hope triumphing over experience.

Andrw

[Loopy-Lou]

My first experience of RGP's was horrendous, I remember sitting in the corridor eyes streaming in pain and a nurse walked past me and asked me if I were casualty!
Look many of us can have a rough first experience with lenses, I was even phobic about them at one point but now - my lens is my life - I could not survive without it and handling it is fine. There are so many types of lenses and solutions and handling them and building up the wear can be taken gently at your own pace. Thing I found was not to put myself under pressure and I learnt to 'relax' the eye muscles when putting it in.
If you did try lenses try one eye at a time, and if you struggle, take a break, shout at the lens, let off steam, have a cuppa, try again.
You can get good advice here about techniques too

[GarethB]

One major step forward is silicone hydrogel soft lenses for KC.

There is a person on this forum who was being reffered for a graft but now they have the silicone hydrogel lenses, the graft as far as I am aware is now on hold.

I've also been made aware of a person who had corneal scaring who was also reffered for a graft. Since going to soft lenses the scaring is still present but less pronounced so the graft has been put on hold.

These are all things we are learning about soft lenses.