UK Keratoconus Self-Help and Support Association

Hello all,

Here's my short story, I have keratoconus in both eyes, left eye has crosslinking done in 2008 and using -2.5cyl to correct astigmatism with glasses (not perfect but coping), right eye has corneal transplant in 2004 and having -2cyl and -2sph in there but glasses don't help.

Recently my doctor here in Bulgaria suggested that I could do PRK + CXL in my left eye to improve vision and also to stabilize the cornea. She says that CXL works for 8-10 years and then has to be done again. My corneal thickness is 470nm in the left eye, is that mild or moderate keratoconus?

Bottom line is I want to get this treatment done but I'm afraid of the PRK because my cornea will get thinner. Would be glad if you share your experiences. I don't want to get to the stage of having a transplant to my left eye as well.... If i get PRK+CXL I will worry about thickness and KC progressing to the stage of needing corneal transplant, if I get only CXL I will blame myself for not taking the opportunity to improve my vision with PRK.... I'm sort of stuck in my decisions at the moment.

Greetings from Bulgaria!

Thanks,
Ilian

Hi Ilian and welcome,
Has the prescription in your left eye changed in the last few years? In everything I've read about CXL, there are references to having it done again if it failed to stop the progression. But I've never seen anything to suggest that it will routinely need redoing after 8 or 10 years. Do you know of any research demonstrating this? Presumably doing CXL with PRK is to ensure that the CXL will counteract the thinning effect of the PRK so leaving the thickness unchanged. But if your prescription hasn't been changing, I wonder whether it's worth doing another, more invasive procedure. Have you ever tried rigid contact lenses to improve your vision?

Hi Anne,

Thank you for the reply! My vision in the left crosslinked eye has not change since 2008 when the crosslinking was done. I don't know of any research demonstrating that it should be redone every 8-10 years, it's what my local doctor told me during my regular checks. I also wonder if it's worth the risk of PRK for a slightly better vision with my glasses ... or without any aid at all (in the perfect scenario). I was put off by rigid contact lenses by the point that they may actually make keratoconus worse, or at least that's what I heard from other KC sufferers and some doctors. I know scleral lenses do an excellent job in KC but there's no long term data on how they may affect the cornea, but I don't know any fitters of scleral lenses.