Advice for first contact lenses after glasses?(And post CXL)

[CrippsCorner]

I say both eyes at once, I mean a week in between each.

If you're able to do that, that's great. Thing is for me my bad eye is a lot worse and there's no way I could have got around without my better eye being okay... in fact I'm worried about CXL part two as it means relying on my bad eye for a while

I notice we are all around the same age 29?

i have an appointment with a private hospital cross linking is £1200 which is the cheapest i have found. The hospital said that my good eye hasnt progressed in 2 years but my left is soo bad that i need to do something to stop it getting worst.

getting bottom line on the chart with RGP's but suffer with dry eyes.

Never tried soft lens, apart from a no prescription soft lens when i tried piggybacking

I turn 30 this week!

£1,200 is the cheapest I've heard of too, but I don't think it should be a case of cheapest quote wins here. If there is literally no progression at all then that's great, and you might get away without performing CXL on that eye. Then again, keratoconus can halt, then come back, so you need to ask yourself if it's worth paying to keep that good vision (you might do anyway of course, but CXL should guarantee that)

PS: It is indeed very quiet on here, where is everybody!? Hopefully enjoying some summer holidays.

[kieran19685]

Thanks - does cross linking open up any other options such as having the ability to wear soft lens or have laser treatment done?

Theres no progession but the hospital recommended cross linking as my left is so bad. Would the hospital provide me with copies of my scans do you think for my consultation?

[CrippsCorner]

Of course, they should at least, I asked for a print out of mine and they did it there and then, and they emailed the scans to the private hospital too iirc.

It's worth remembering that after CXL you won't be able to wear RGP's for 3 months. If you're thinking of trialing some soft contacts, do it now! If you can get a decent enough prescription, that'll help to tide you over whilst your eye(s) recover, as you can wear soft contacts after 1 month.

Laser treatment I don't think is going to help. However I would like to know is laser treatment a viable option for correcting astigmatisms, even if it doesn't touch the keratoconus... the only thing I've heard of performed with CXL is intacts, but in all honestly I don't know enough about them to give any recommendations. There was something else I read about which was interesting and made sense to me though. Do you find that poking and prodding your eyelid around makes the vision better? For me, if I pull my eyelid down and to the side it's so much sharper! Apparently they're testing doing that whilst performing CXL to get it to stabilize in the 'better' position. It's not here yet, but hopefully one day that could help even further.

[kieran19685]

How would I go about getting soft lens ? I went to a regular opticians last year who wouldn't touch me as I have KC and told me to go back to the hospital , but the hospital always have kept me on RGPs

[Prism]

Cripps - Precisely my concern! They seemed surprised I was concerned about a double CXL treatment like that. Both eyes at once, they were saying, is becoming the standard treatment going forward.

[Prism]

And in fact, I couldn't see a great deal the week after both were done.

[James_Ldn]

Apparently they're testing doing that whilst performing CXL to get it to stabilize in the 'better' position. It's not here yet, but hopefully one day that could help even further.

They've actually just started doing this in some places abroad (not sure about the UK though). It's called 'refractive cross-linking' and the early results seem good so far, but it's only been available for a few months. I think essentially it involves more intense cross-linking on the peak of the bulging cornea and less everywhere else, which has the effect of both flattening and stabilising the cornea. This is opposed to standard cross-linking which uses the same intensity across the whole cornea.

One particular company has branded the procedure as 'PiXL' (Photorefractive Intrastromal Cross-Linking) and uses a 'KXL II' system. You can look it up on google.

I'm going to keep my eye on the results over the next few months (no pun intended!) as it might be quite a good option for the future. In theory it should be preferable to laser eye surgery or PRK because there would be no removal of tissue, and it should be preferable to Intacs because you're not having anything permanently inserted into the cornea. But anyway, still early days yet so let's wait and see how this thing develops!

[Prism]

Great information on those new tests James, like it.

Puns seem to crop up all the time when talking about KC. I've often finished explaning the whole thing to the uninitiated with a "there's alot worse in the world, you've got to keep a perspective on it - no pun intended"

[CrippsCorner]

How would I go about getting soft lens ? I went to a regular opticians last year who wouldn't touch me as I have KC and told me to go back to the hospital , but the hospital always have kept me on RGPs

Tell the hospital you want to try soft contacts, simple as that. They're there to help you so should bloody well listen! Personally my hospital told me they were going with soft contacts as my reaction to RGP's wasn't great...

As for private opticians, I used a keratoconus specialist as listed on here, but the website link seems to be down atm... there are plenty throughout the country though.

[James_Ldn]

Great information on those new tests James, like it.

Puns seem to crop up all the time when talking about KC. I've often finished explaning the whole thing to the uninitiated with a "there's alot worse in the world, you've got to keep a perspective on it - no pun intended"

I guess it's good to keep a sense of humour when dealing with keratoconus!