UK Keratoconus Self-Help and Support Association

Went to see a specialised consultant at St Pauls Eye Hospital, Liverpool on Friday, just gone.

He basically said the CXL won't be of help.

He could do Intacs, but due to the cone location and astigmatism, he doesn't feel it would be worth it.

I'm pretty much at the limits of contact lens correction.

Its pretty much left to do a double corneal transplant Now that scares the shit out of me. I can handle having my forearm screwed and plated, my gallbladder removed, my few ear operations and kidney stone removals. But eye pain I really don't do. Even tho, I had a squint correction when i was about 8 years old.

If I keep with contact lenses, I would need to make lifestyle and work changes to deal with dark/night time vision.

Thanks.

Hi Munster,
That sounds like quite a knockback, when you were hoping CXL would work for you. And lots of people here have thought long and hard before finally deciding to have a graft - and others have decided it's just not for them. But if the main issue for you is eye pain, then that's not very common with a graft. Although some people here have had some pain in the first week or so post op, for most of us graftees it's discomfort rather than pain. After each of my grafts, the eye felt sticky for the first few weeks and I was much more light sensitive for a while. But I didn't have any pain. To me, the other things you've had done sound a whole lot worse! But then, we're all squeamish about different things.
Good luck, whatever you decide.
Anne

Thanks Anne. I do have a few more options to pursue down the CL route, like Kerasoft IC's and I also my revisit piggybacks.

I was playing around with my old test piggyback last night. I realised that it reversed the light trails/streaks and ghosting. Overall, the acuity was sharper than the soft lenses. It was the 1st time in a long while I could see up the street without a slight blur to the distance. Just need to sort out that ghosting and light blur and I may get to avoid the knife (so to speak)

Maybe a second opinion wouldn't do any harm?

Nickysells1 wrote:Maybe a second opinion wouldn't do any harm?

Yup, I dropped a letter off to my GP asking for a 2nd opinion referral to Manchester Royal Eye Hospital.

Thanks.

munster

All the best with your second opinion; it is an absolute right of everyone in the NHS to seek a second consultant opinion.

Yours aye

Andrew

The consultant I saw nhs wise wanted to to put kerrarings in as well as cross linking before giving the cross linking a chance.

I think sometimes all they think of is getting people under the knife!

Best of luck Munster

Here in the US there are ots of people who try what we call "Intacs" and then remove them when they don't work. I would try the Synergeyes Clearkone or Ultrahealth and see it hey work. I have heard many people say that theses lenses work and they don't need a transplant/graft. Good luck...those transplants scare the c**p out of most of us. If your corneas are not scarred up a lot contacts should still work.

Brad.