Can't bear wearing contacts...

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...!).

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.

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. ;)

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.

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.

Jennifer, sounds like you've had a hairy run with your KC, but that you're coping very well.

I originally went to a practice which shunted me between 3 different optometrists depending on who was available and this totally buggered the whole process up. Plus they didn't have the machine which measures corneal topography so there was too much guess work involved. I changed clinics a couple of months ago and my new optometrist knows a lot about KC and is pretty cluey. I'm on my fourth trial RGP with him now, and according the most recent fluorescein examination, this current lens is basically a perfect fit with no pressure spots or abrasions. The problem is though, I seemed to have developed dry eye in both eyes and even in my left eye which I used a soft lens in, I can't even tolerate that any more. I have used stack of drops from different brands but they don't help much. He thinks tis issue may be contributing to the lack of comfort I am getting even with my new lens, and of course this isn't helped by the fact I've noe gone back to glasses for a break and then have to readapt to the RGP all over again. But after 3-4 months of having to take out the RGP 10 or more times a day, clean it and reinsert it to make it comfortable, the glasses are a very welcome break, even if the vision isn't as great.

I wish I knew what caused this dry eye thing - the same thing happened last year for a couple of months. So frustrating, because generally I could wear both types of lens for 14-15 hours a day.

BG - I do understand the problems for DH working in dusty environments with RGPs. As far as I can tell, they are pretty much useless unless you work indoors. Maybe he sould be looking into Intacs. Not sure if you've read much about them, but they help flatten the cornea somewhat, and although glasses would still be needed, they sound pretty cool for advanced KC. Could be exxy though?

expense doesn't matter if it gets his vision stabilised - just dont' have the dollars right now - will look into it though - thanks for the suggestion

TBH I know very little about the concept, except that it sounds cool. Lots of mixed reviews on the interwebz though, but something worth keeping in mind I guess.

yeah for sure - will get in contact with the specialist in melbs to get some info rather than on the web - he was a really "down the line" honest guy - if he thinks it's a bad idea, he'l say so

DH is the opposite he seems to get alot of gunk happening in his eyes. He finds it such a pain cause sometimes he has to take them out a few times a day to clear the gunk.
It's not related to the KC, he has no infections or anything like that.
OPt. doesn't know why his eyes produce so much crap either.
Occasionally DH get's dry eyes as well and the lenses stick to his eyeball, he has to get it out asap or load up with drops and move it around a bit. Sounds and looks very painful.

Definitely no easy solutions. I hope the dry eyes ease up soon!

BG: will be interested to hear how you get on. (in summary, they are two little rings which get put in just under the cornea but can be removed surgically at a later stage if/when required).

ll: thanks :)

Argh slyder, that is problematic. I hope a break is all you need. I am very lucky to be tolerating the lenses as well as I do, my vision without them (glasses do nothing because my KC is so advanced) would mean no driving, working or reading. :( I have astigmatism as well. I hope your new opt gives you the right level of care to get everything on track.

BG: Your poor DH. Seems like there needs to be a lot more done in this field to help us problem patients!