UK Keratoconus Self-Help and Support Association

HI,
I m in my first year in sixth form collage.
so, i hav got my exams in january next year (2010).
can anyone tell how many days do i need to be off collage and cant study for after having a cornal crosslinking ?
and does anyone know which is the best clinic in london which does cornal crosslinking?

thnx.....

Akash

first of all, every good wish with your exams in January.

Thank you also for narrowing the parameters of your search. It will be a help for others to know that you are looking for a hospital or clinic in London. I'm afraid that sitting in Scotland I am not able to help.

Every good wish.

Andrew

I had the operation wednesday 14 october, and am signed off until monday 26 October (only work monday to friday). However i do spend 8-10 hours a day on a computer, and i certainly wasnt able to to use a computer at the first half of this week, yesterday and today i have been able to use a computer for any length of time for the first time. I was fortunate as i didnt suffer with high pain levels, though i understand that others can and do suffer with higher pain levels.

It very much depends on how much you use a computer and how much you suffer with the pain depends on how quickly you resume your studies. I am more light sensitive than prior to the procedure, but this is fairly normal. My eyes are still feeling gritty and dry, apparently it is normal.

With regards to clinics i have sent you an email detailing the clinic i used, as i said in my other post other people chose other clinics for their own reasons. Do an internet search for CXL on google. It will come up with a number of clinics and look at their websites, email/phone them and ask about the procedure, costs and their experience. See who you click with. Which clinic/hospital are you under on the NHS? Ask for their recommendations as well.

Personally the clinic i used was fab, talked me through everything both prior to the procedure and during the procedure and made sure i was comfortable at all times. They have just moved into new state of the art building, from sharing space with the NHS, and the new building looks absolutely fabulous. I actaully had my procedure at the old clinic, and my follow up appointment the following day was at the new clinic.

The procedure takes upto a couple of hours, then a follow up 24-48 hours later to take the bandage contact lens out, then further follow up appointments 1 month, 3 months and 6 months after the procedure as i understand it (not sure if there is a further follow up 12 months later, i cant remember).
I was given antibitotic drops to put in 4 times a day for 7 days, and an eye shield to wear at night following the procedure. Not allowed to get "dirty" water in your eyes for about a week - ie not allowed to wash your hair in the shower - problem for me as i have a mop of hair that needs washing every day

Any other questions please ask and i will do my best to answer. Please note i can only answer based on my own recent experience.

Hi Akash,

As a professional, the fact you are only 16 makes me want to assure myself you are discussing this with a parent or guardian. CXL has been around for 11 years and has been monitored in an ongoing study for 8 years. No-one knows what will happen to the cornea 20 or 30 years afterwards yet. As a 16 year old, this has to be something you have to be aware of and indeed is the "big question" everyone faces at your age. Do you stop KC dead in its tracks now and leave the future to itself or do you wait with the possibility the condition may progress and cause more problems than you have now. There is no easy answer to that.

For more information, I have written a basic CXL Fact Sheet for the Irregular Cornea Foundation which you can view here http://ic-f.org/?page_id=85 and also there is more information on the CXL Club website and forums http://www.cxlclub.org.


Lynn

Lynn,

If your eyes are still changing in your 40's, is CXL an option for us oldies?

Cheers

Fordy

This is a $64,000 question!!

Received wisdom says your cornea should be stiffening up at this point, therefore most surgeons will say its not "necessary". However, if you are showing signs of progression or instability, yes it can be done.

No-one yet has all the answers about KC - and in fact almost everyone tends to be some sort of exception to the "rule" - whatever that is! Some people START with KC in their 40s, which seems to fly in the face of the "natural" stiffening up theory.

Lynn

At the conference in Glasgow, one of the ophthalmologists explained that one if the necessary indicators for CXL was that there had to have been progression in the previous 12 months. Asked that same question by an older person he said that no real answer could be given in an individual case without an examination, but that he would not rule out offering CXL to an older patient with the very important caveat that there must be over 400 microns of corneal thickness.

Andrew

Hi Akash,

After CXL, eye heal back in 2-3 days time. But you get a foggy/hazy vision upto 3-4 week.

But as the case in KC that one eye is better so you can always study with better eye.

So, go ahead with CXL..if you are taking treatment for one eye and other is better

Cheers,
Deepak