corneal collagen crosslinking on nystagmus eyes?

[patannh]

hallo everyone, i need some help please. doctors in australia too busy to answer my questions mmm. anyway my son has keratoconus very badly in one eye and not so bad in the other but he also has congenital nystagmus. he is planning to have the corneal collagen crosslinking done soon. doctors here have made him wait over a year and they can sometimes not get a proper topography reading due to the nystagmus they say. his eyes have deteriorated with the keratoconus in this time and he is having a lot of trouble now. one thing they wont answer is how are they going to get him to hold his eyes till to do the CXL. his eyes wobble back and forth constantly and he has no control over this. any information would be very welcome. thanks.

[Anne Klepacz]

Hello Patannh and welcome to the forum,
I don't know whether we have any members to also have nystagmus. But I do know of someone who had crosslinking done under a general anaesthetic, so that could be the answer for your son. You mention lack of support in one of your other posts, but there is a KC support group to ours in Australia. You'll find it at www.keratoconus.asn.au so they might be able to give you more advice. Here in the UK there's also a very good support group for people with nystagmus - I don't know if there's an equivalent one in Oz.
Anne

[patannh]

thanks Anne. i know of Keratoconus Australia and their site has a lot of information but so far not found any good forums so that my son can join and chat. i have sent him links to this site as really it doesnt matter which country you live in with the internet. general anaestetic brings the cost up to about $10,000 in australia instead of $4,000 (both eyes being done). so its out of our reach. Our government do not support people who have keratoconus at all and our medical insurance people here do not even know what keratoconus is let alone provide insurance. its a catch 22....lose eye sight.....lose job....cant pay for treatment to save what sight is left. with keratoconus so prevalent throughout the world i would have thought the governments should have set up screening for young people prior to leaving school so that we didnt have so many people in their twenties unable to see well enough to contribute to society and lead productive happy lives. sorry im on a bit of a whinge session i know but the 'system' here is so frustrating. i went to the same school that our prime minister went to here in Adelaide but i bet she doesnt know what Keratoconus is! If she had a child who was losing his sight due to KC maybe she would set the medical system up here so that ordinary aussies can afford proper medical help. I will send Julia a letter next!!! Thanks again Anne. If you find out any further information about nystagmus eyes and CXL let me know.

[Anne Klepacz]

Sorry - that's my ignorance of the Australian health system. I had naively assumed that, because Australia was one of the first countries to do a large scale trial of crosslinking, the procedure would be widely available in Oz and supported by the government. Good luck with your letter to Julia!
And of course your son is welcome to join this forum. We do have some other forum members from Oz, though I haven't seen any posts from them recently.
All the best
Anne

[Whiteshepherd]

I used to have that too after getting into a motorcycle accident. The doctor just held the eye and did the lasik flap. I am sure he/she can do the same for the cxl.

Brad

[Anne Klepacz]

Patannh,
I've sent you a PM with some more info on nystagmus in Australia, in case that's any use.
All the best
Anne