UK Keratoconus Self-Help and Support Association

Hi,
I've had keratoconus for 5 years in both eyes and after years of trying different types of lenses, i've been advised to go for intacs and if they don't work, then to have a full graft for my left eye (Bad Eye). It's very frustrating as contacts give me good vision. however they are so painful and uncomfortable to wear!!!!

The advice needed though is my Doctor has said i should go for cxl for my right eye. I have decent vision with glasses in the right eye so i'm concerned if cxl somehow goes wrong, it may deteriorate my vision in my good eye, which if was as bad as my left eye, i would be almost blind!!!!!

So, the question is, should i go for cxl on my good eye or keep decent vision at the moment?

Any advice would be appreciated

Thank you

cross linking can for many provide many years of stabilisation n thus rapidly slow down the acceleration of degeneration, yet for some it doesn't offer this and they are no better off for having it done,

due to cross linking still being a relativly new treatment option their is very little known about the long term of people who have it done.

post crosslinking many experience temporary instability whilst the eye adapts n settles down again.

Ultimatly only you can make the deciosn to have or not have, Id be tempted if it was me to write a pro's and con's list, talk to specialist n talk to people who have had the procedure (I haven't)

good luck x

Pedro

You seem to have arrived at a crossroads. I wonder whether they have really exhausted all the contact lens options? I know of people who get good results from soft lenses made specially for people with keratoconus.

If you are really at the end of the road with lenses, then the surgical options that gal short of transplant will probably be a good thing to explore before going through a graft.

Every good wish

Andrew

Thanks for your opinion guys,

Andrew, believe me, if i could continue with the contacts, i certainly would but my eyes really struggle with them. Add in Blepharitis and sores around my eyelids and unfortunately i find them impossible to wear.

Again, thanks for your thoughts thus far.

I came to the end of the road with lenses too. At least there are other surgical options available now.

All the best

Pedro,

As you can see well with your contact lenses it may be worth asking if you can piggy back them with soft disposable lenses underneath. This should make the lenses more comfortable for you.

Lia

Hi pedro,

I was in your shoes around 2 years ago. My left eye was too thin for Crosslinking, but my right eye had decent vision and was treatable. Looking back, I'm glad I went through with it when I did. Like with any surgery, it is a bit of a gamble but it's worth it considering the benefits - it may stop the progression of KC in your eye. With me it did, and I'm now enjoying great vision with the help of a scleral lens in my right eye. As far as I know, the success rate for Crosslinking is quite high.

Putting off Crosslinking might enable you to have decent vision now, but remember Keratoconus is a progressive disease - the cornea's shape will keep changing over time.

Best of luck

Where you say your contacts are uncomfortable, are you using RGP's? Like someone else mentioned, there are keratoconus specific lenses that are meant to be a lot more comfortable that you could try using.

As for the right eye... if it was me I'd jump at CXL. You say it's good now, well CXL should keep it that way. Why wait until it gets worse to do something about it?

I've read that with both intacts and CXL you may still have to wear contacts anyway. I wonder if 'normal' contacts can be used in this case though?