UK Keratoconus Self-Help and Support Association

Hi everyone

I'm hoping someone can give me some advice.

I've had KC since I was 14, now 21, with rapid progression. I had scans in November and they said I needed cxl within the next 6 months to still be eligible (verging on 400 mark in one eye). I was also told I need both corneas graphed.

I returned today for a follow up, to which the consultant (a different one to before however part of the same team) seemed unconcerned regarding the cxl treatment, said I was not at a surgical stage , and highlighted every risk he could regarding cxl!!! Seemed to want us out of the room as quick as possible.

As you can imagine I'm now very concerned. I have no idea where my KC stands, where I should go next, and if I need an urgent treatment! My KC is very far progressed for my age.

Can I ask for a second opinion? Should I seek a private consultancy? I have been left frustrated and confused, could anyone advise me on where to go next?

Thank you
Stacey

Hi Stacey,
I'm not surprised you're confused when you've been told such different things by dfferent members of the same team. Though I'm confused by what the first person seems to have said - if you have CXL, then there shouldn't be any need for grafts, as it would thicken the corneas and stop progression. Yes, you're definitely entitled to ask for a second opinion so asking your GP to refer you to another hospital with a good corneal clinic sounds like a good idea.
Good luck
Anne

The first one advised me to have cxl before having the graph done so it will stabilise the cornea. The eye sight is poor at best in my right eye, seeing blobs of colour really, but its still managing to progress!

Could anyone point me in the right direction for a reliable private consultant. I live in Bristol but don't mind travelling.
Thanks