Just Diagnosed With Keratoconus? What Happens Next
Being told you have keratoconus usually comes with a lot of questions, and most of them aren’t “what is it?” but “what happens now?” This post is about the next steps. If you want the background on the condition itself, start with my page on keratoconus treatment in Brisbane, and for the procedure that stops it getting worse, see corneal cross-linking in Brisbane.
Do I need cross-linking straight away?
It depends mostly on your age and on what your first scan shows.
If you’re a teenager, I don’t take a wait-and-see approach. Young corneas can change quickly, and children are more likely to have advanced disease by the time they’re diagnosed: one large series found 27.8% of children already had the most advanced stage, compared with 7.8% of adults. Documented progression, or a map that’s already advanced at the first visit, is reason enough to treat. I’ve written more about this for families in keratoconus in teenagers.
For many adults, especially with an earlier-stage map, I repeat the scan first to see whether the cornea is actually changing. Some adult corneas stay stable for years, and they don’t need treatment just because the diagnosis has been made.
How do you know if it’s progressing?
By comparing scans. The diagnosis is made with corneal tomography, a three-dimensional map of the cornea’s shape and thickness, and the same scan repeated over time shows whether the cone is steepening or the cornea is thinning. It’s painless and takes seconds.
You may notice clues yourself too: glasses that need changing every few months, with the astigmatism creeping up each time, or contact lenses that stop fitting as well as they did.
What can I do myself?
Stop rubbing your eyes. It sounds too simple, but it’s the most important thing in your control. In one analysis, eye rubbing raised the odds of keratoconus fifteen-fold. If hay fever, eczema or allergies make your eyes itchy, treating that itch is part of treating your keratoconus, and it’s worth asking your GP or pharmacist about allergy drops.
Can I keep wearing glasses or contact lenses?
Yes. Glasses work well in early keratoconus, and rigid or scleral lenses often give the clearest vision once the cornea becomes irregular. What lenses don’t do is treat the disease. They sit over the cone rather than changing it, so they’re used alongside cross-linking, not instead of it. I go through the options in are contact lenses the only treatment for keratoconus?
Can I have laser eye surgery?
Not standard LASIK. Cutting a flap and removing tissue weakens a cornea that’s already weak. There is one exception for selected patients: topography-guided laser to smooth the surface, combined with cross-linking to stabilise it. I explain who that suits in can you have laser eye surgery with keratoconus?
Does pregnancy make it worse?
It can. Pregnancy hormones can soften the cornea, and keratoconus sometimes progresses during pregnancy. A scan before you conceive makes it much easier to plan, and I cover the evidence in keratoconus and pregnancy.
Will cross-linking need to be repeated?
Rarely. For the first year after cross-linking the cornea remodels, and the scans move around before they settle. That’s expected and isn’t the treatment failing. Real progression is judged over a longer period, and I explain how in what if cross-linking doesn’t work? If you’ve been told your cornea is too thin to treat, read is my cornea too thin for cross-linking? first.
Will I need a corneal transplant?
Most people diagnosed today never will. Cross-linking stops progression in most eyes, and if vision has already been lost, CAIRS can reshape the cornea using donor tissue rings, which keeps many people out of the transplant queue. I’ve written about that in can CAIRS save you from a full-thickness transplant?
Your next step
If you’ve just been diagnosed, the most useful thing is a scan with someone who treats keratoconus every week, so you know whether yours is changing and what to do about it. You can book an assessment, or read more about keratoconus treatment in Brisbane.
Frequently Asked Questions
Do I need cross-linking straight away after a keratoconus diagnosis?
Not always. If you're a teenager, or your first scan already shows advanced keratoconus, I usually recommend treating without waiting, because young corneas can change quickly. For many adults with an earlier-stage map, I repeat the scan to see whether the cornea is actually changing before recommending cross-linking.
How do you know if keratoconus is progressing?
By comparing corneal tomography scans over time. Tomography maps the shape and thickness of the whole cornea, so changes show up on the scan before you notice them in your vision. Glasses that need changing every few months are another clue.
What is the most important thing I can do myself?
Stop rubbing your eyes. Rubbing is strongly linked to keratoconus getting worse, so if allergies make your eyes itch, treating the allergy is part of treating the keratoconus.
Can I keep wearing my contact lenses?
Yes. Rigid and scleral lenses are often the clearest way to see with keratoconus. They correct your vision but don't treat the disease, so they're used alongside treatment, not instead of it.
Does cross-linking need to be repeated?
Rarely. The scans move around for the first year as the cornea remodels, which is expected and isn't failure. Real progression after cross-linking is uncommon and is judged over a longer period.
Will I end up needing a corneal transplant?
Most people with keratoconus today never need one. Cross-linking stops progression in most eyes, and CAIRS can reshape a cornea that has already lost vision, which keeps many people out of the transplant queue.
