Can't bear wearing contacts...

[Jennifer13]

Hi slyder, I have severe KC in both eyes and have had an episode of hydrops in each eye (where the cornea actually splits and fluid leaks in - very nasty stuff and just a shade away from a cornea transplant on one side ). One of my corneas is so steep I can't get lenses to correct it anywhere near an acceptable level of vision, but at least it helps me get about five lines down the board. My other eye is much better with lenses.

But my optometrist still fiddles around and tries one fit after another if need be to get it right. I have had lenses sent back three or four times to get a better fit on that eye. I take out the insurance cost every time I need a new lens because I know, even now, it's trial and error. The thing is, depending on how bad your KC is, the contact lenses can actually help the condition, by reducing the level of pressure on your cornea. So not having contact lenses in my case is not even an option (besides the fact I'd be legally blind because glasses can't correct my vision enough), I'd end up with a double cornea transplant before I'm 40.

It sounds like you should be seeing someone who specialises in KC. I found my opt through my eye surgeon and this opt was the first one in numerous tries who got it right for me. PM me if you live in Sydney and I can give you either name for a recommendation.

ETA: there's also a KC Assoc in Australia. They might be able to help you out with a good opt who specialises in your area.

[turtleschell]

Can Laser fix it?

I have tried about 12 brands of contact lenses and still haven't found the perfect one.
They either make me super super sleepy, or they slip around my eye, or they give me crappy vision.
Apparently drinking heaps of water helps (yeah right....)
:S You should just try heaps of different brands till you find oen that's awesome.. Heaps of people have no problems with contacts. Hopefully you find one that fits!

[Jennifer13]

Laser treatment is a no-no with KC. Because of the thinning of the cornea, doing anything to the cornea will seriously jeopardise your sight.

The contact lenses for KC are rigid gas permeable (RGP), or 'hard' contact lenses, not like the disposable ones you can use on a daily basis, 'soft' contact lenses. That means they have to be made as you would with glasses and individually shaped and fitted for each eye. So a bit more complicated than glasses. And what looks like it might fit when your opt measures your eyes and the steepness of the cornea might not fit as well as anticipated, or rub too much and leave a dry spot on the cornea. It all gets very complicated (which is why one Medicare-subsidised visit to an opt every two years is a joke if you have KC, but that's another thing...!).

[ll80]

Hubby has KC and wears the RGP's.
God he was awful for the first week wearing them.
As his Opt. said to him. Four days of hell and two weeks of purgatory then you should be smooth sailing.
He doesn't seem to need drops as often any more, after about 2 years. The ones he finds the best are Boston brand. Same with cleaning them.

He was lucky to find an Optometrist in Toowoomba who is a specialist in the field and sees him not as regularly as he should. It's important to see someone who specialises. Maybe get in contact with Keratoconus Australia.

ETA - DH has had no trouble getting his contacts to fit properly. He is legally blind with out them in and one of his eyes is very bad. Perfect both times he's had them done. So I'd probably be going else where to get them fitted properly rather than wear soft lenses and risk the KC getting worse.

[Jennifer13]

ll80, I so empathise with your hubby! But when you don't have any other option, you get used it as quickly as you can. Mine are Boston too, but I think that has more to do with who supplies the KC shaped lenses anyway, I don't imagine there's dozens on the market.

And thanks for putting the right name of the org in your post. Clearly I haven't contacted them for some time.

[ll80]

I know DH's lenes got made in Brisbane by a specialist company. I was under the assumption that's where they all got made but now that I think about it, probably not
Might be worth looking into though.

[briggsy's girl]

sorry slyder - didnt see your post before now - DH's glasses have been a different grind (similar to those for astigmatisms i think) - he still can't bear the contact lenses - which is seriously problematic for us! don't know too much more about it - we just let the optom do his job and we get the script filled. the progression is more rapid than we had feared so we're going to have to look into other options for him very soon.