UK Keratoconus Self-Help and Support Association

Hi, just thought I'd introduce myself.
My name's Abbey, I live in New Zealand I'm 29 and I have 2 children aged 10 and 12.
I was finally diagnosed with KC 4 weeks ago but my symptoms started 7 years ago.
I've got some Q's.
When my vision gets to the point where glasses don't help any more do I have to get hard contacts as I have very irritable eyes and don't think I could handle using them. Would my next option be surgery? Do I even get a say?
Also my opthamolagist doesn't seem too concerned about my KC should I be concerned about this? He didn't even tell me much about KC just that it should stop eventually.
What is the outcome after surgery?

Does a person achieve 20/20 vision after surgery or do they continue to wear glasses/contacts?
I value any replies to this topic as I am totally ignorant and value the input of people experiencing the same as me.
Also is it normal to experience eye pain?

Hi Abbey and welcome

I would advise you to take the next step in wearing contact lenses. There are so many different lens types for keratonconics....even soft lenses such as kerasoft. I would advise you to try every single lens type available to you before even thinking about taking a graft. A lot of us found it hard to cope with the small hard rgp lenses at first, I eventually got to the level where I could tolerate them for about 5-hours. I have tried a lot of lenses and found some I really got on with but as my KC progressed those lenses were no longer suitable so had to move onto the another type. The whole routine of cleaning them etc and putting them in and taking them will get easier over time and you will get used to it. It used to take me 10 mins to either put them in or take them out now i can do it in 30 seconds on a good day.

Not many people can see 20/20 or better unless they're lucky. Glasses may help and sometimes may not. It depends on how the cornea heals. Stitch removal can also affect you vision. There isnt usually a lot of pain after surger but irritation for a few days, unless theres a loose stitch later on.

Regarding eye pain I only get them after over weraing my lenses continously for a few days and my eyes tend to feel sore for a few days. I just take a break from wearing contacts until my eyes feel better, but I eventually figure out my max lens wearing time.

Hope that helps

Hi Abbey.

Welcome to the forum.

I agree entirely with Asif. Part of the problem with Keratoconus is that it is not easy to fit a lens on a KC eye. When you go to your optometrist ask how much experience (s)he has fitting people with Keratoconus. If the answer is "not much" ask for a recommendation to somebody who has more experience.

I'd strongly advise against a graft as an early option. Even when the time comes for surgery you may be offered other procedures. INTACS are sometimes fitted in the UK, and C3R is becoming available here.

I am afraid it is still quite rare for a graft to result in 20/20 "uncorrected" vision, although I do now have very near this level in my graft eye with glasses. On the road to this recovery I remained registered blind for nearly two years after my graft.

The graft is not a cure for KC. It is just another technique for the management of the condition.

All the best

Andrew

Hey Abbey,

What part of The White Cloud are you from? I am from Oz.

There is a school of thought that the later you are diagnosed the less severity you will have. As a rule of thumb this is ok, but exceptions occur. With the greater technology available, KC can be diagnosed when it is less severe, these are both reasons your eye carer may not be too concerned.

The basic progression is glasses then contact lenses. Only 10% of people require surgery apparently. The outcome from surgery varies, from unaided vision to requiring glasses (as I do) to requiring lenses, but generally it is easier to fit lenses on a grafted cornea. Because grafts are not without risk and do not guarantee greatly improved unaided vision they tend to be a last resort form of treatment.

Abbey,

I agree with everything written above, but I feel that it is worth pointing out to you that many optometrists who do not have experience of KC (and after all, it is a rare condition) tend to tell you in their first breath "You have KC. You will need a graft."

Don't be paniced by them, it is just their ignorance showing.

As Andrew says, try to find a better optician - one who is more used to dealing with keratoconic patients and the "weird and wonderful array of contact lens options" avaiable.

All the best,

Abbey

One thing I do know; and although this is still some way from you; is that there are many renowned Contact Lens fitters is OZ who are extremely experienced in fitting KC patients.........not to sure about NZ though

With regards to KC and Grafts, it may be useful for you to feast your eyes of the FAQ sections which now contains some really useful information......

J