UK Keratoconus Self-Help and Support Association

Hi All

Basically I went to see a specialist about getting laser eye surgery so I do not have to carry a years supply on contact lenses with me when I go travelling. Unfortunately, he diagnosed me with mild KC instead.

He gave me 3 options:

1) Do nothing. After my travels come back for a check up
2) Have cross-linking now and then LASEK when I get back
3) Have cross-linking and LASEK at the same time

I am not sure of what will happen if I go with option 1. I do not have time to monitor the progression as I am going travelling for a year in 5 months time. My worries are that it may progress whilst im away and cause huge problems.

Issues with the 2nd option is that I do not know where my KC is going. Its very mild at the moment but I dont know when it started and when or if it will progress. I dont want to spend the money on cross-linking now if its not entirely necessary before I go travelling (cost £3000).

The 3rd option is risky as I am only 20 years old and this has rarely been done on people so young. This works fine in people 30+. It will also cost me around £5000 so would cut a huge chunk of travelling money.

I really need some advice on what people think I should do ...

Many thanks

hey Traveller, welcome to the forum

I can think of a fourth option: ask for a referral to an ophthalmologist and discuss options with him/her.

I certainly wouldn't be 'bounced' from diagnosis to expensive treatment in a single step. Also, remember that not everybody recovers quickly from CXL, so there would be no guarantee that you would be in a position to travel, or even able to get insurance to cover your eyes while you were away.

Andrew

Thanks Andrew.

From looking on the forum I can see that people have been diagnosed and lived perfectly fine for years so rushing into doing preventive surgery does seem a bit hasty.

I'm not sure whether there are any ophthalmologists on the island where I live. I already had to go to another island to see the specialist. Can ophthalmologists work as normal optitions? I may need to go to England.

From experience, can anybody tell me if progression can happen rapidly within a year? I have very mild KC now, my vision is perfectly fine with glasses or soft contacts.

Thanks

No one can predict how quickly or how far keratoconus will progress. for most people with keratoconus, the condition never progresses beyond the point where glasses or contact lenses are an effective method of management; for some there is a need for surgery and for a very tiny minority there is the possibility to their condition progressing to the point where they lose all useful sight.

In your place, I'd talk first to my GP. He or she would know the hospital to which to refer you.

When do you begin your travels and where are you heading?

All the best.

Andrew

I just had this done three weeks ago and still cant see well out of the eye that I had done. If you are leaving soon I would wait. Not to mention I would totally see another eye doc. Also considering that cross linking is pretty new. Why risk your vision now when you can use soft lenses?
Don't freak out and make a quick decision. I know that it is hard. I found out I had KC the same way as you did. It can be overwhelming and you feel like you need to do something now. I know I hated feeling like my hands were tied and I hated that I had no choices. In the U.S they hadn't even heard of cross linking. That was only about 4 yrs ago! Just think it through! I wish you the best of luck!

Thanks, all of this advise has really helped. I'm going to see my GP tomorrow and see what he thinks and perhaps go to the UK to see another specialist.

I am leaving to go travelling in October. Going on a 10 month tour starting in Asia, then Australia, New Zealand and South America.

Will keep you posted.

Thanks