17 and worried!

[gemma02]

Thank you all very much, I will certainly look into cross linking more as this seems to be the most successful way of preventing the progression of KC. I feel a lot more aware of what KC actually is and what can be done about it - so thank you! Hopefully the hospital trip will go as well as it can go *touch wood*

[munster]

Hi Gemma,

I'm not sure where in the world you live, but I believe that CXL is available on the NHS at St. Pauls Eye Hospital, Liverpool (Northwest Region) performed by Mr Batterbury. He may also perform Intacs procedures too.

[gemma02]

Ah okay, thank you! I live in south-west England, so will have to do a bit of research!

[Clare]

Hi Gemma,

I've had cross linking done fairly recently (my last op was exactly two weeks ago, but I've had 3 in the last year).

The good news is that if you catch Keratoconus early on and do cross linking then you recover from the op faster and the chances of success are boosted. It sounds like your keratoconus is in the early stages so if you take action now you could be enjoying relatively good eyesight in the future - I wish I'd got my cross linking done 8 years ago when mine was first diagnosed.

I'm happy to answer any questions you might have about the procedure as it's all so fresh in my mind, but in an effort to share some experience, last week I also made a little website for future cross linking patients which might be worth a read: http://clarem123.wix.com/crosslinking-advice

Best of luck,
Clare x

[James_Ldn]

Hi Gemma,

I've had cross linking done fairly recently (my last op was exactly two weeks ago, but I've had 3 in the last year).

Hi Clare. I'm assuming your first cross-linking wasn't successful then? Did you have 'epi-on' or 'epi-off'? I've read that a lot of 'epi-on' operations aren't particularly successful in the long-term.

[Clare]

Hi James,

Yes, I started with epi-on in February last year and then subsequently epi-off in both eyes. The problem was, as my first eye continued to deteriorate, we couldn't tell if it was due to the operation of natural progression of the keratoconus.

I've heard that the outcomes of epi-on operations aren't proving to be as good as initially hoped too and I've noticed that my ophthalmologist has all but stopped recommending it as an option. From my point of view the epi-on was not noticeably easier and it's much better to do the job properly the first time!