UK Keratoconus Self-Help and Support Association

Hi everyone,

I’ve had KC for 5 years now, 4 years totally fine then sudden huge progression in 2023. I’m around 5 months post cxl now, the first few days were horrendous and I slept in a dark room for 36 hours being unable to open my eyes (I only had my right eye done but I think it was an adrenaline crash coupled with the bright lights shining on me). Initially I felt improvement and my consultant said I had initial hazing which is now clear, but 6 weeks on I started with a small amount of ghosting, now 5 months on the ghosting has suddenly gotten worse, and spread into my left eye to the point my most up to date glasses makes it even worse so I’m currently having to use 4 year old prescription glasses still with some ghosting. I use screens a lot either working or for enjoyment (8-10 hours a day with breaks). Is a progression in ghosting normal and can it improve or is that something only glasses or contacts will fix now? Text is bleeding out below, above and to the left and I’m even seeing ghost in pictures making faces hard to distinguish, im picking up small flashes of light and what looks like other halos of light in and around text in certain places too. I also suffer from real bad dry eyes which I manage with drops and I also try other methods such as cold compress for relief.

Coupled with this, my 3 month check up showed some stability and little progression, however my eye test didn’t match up and was much much worse to correct, could there be any other reason for this?

At present my right eye is barely useable with or without glasses and my left now the ghosting has worsened also feels worse, though as of September my consultant said we weren’t at the point of cxl there yet. He wanted to avoid full invasive surgery as I’m still only 30 but my vision feels so progressively poor I’m increasingly tempted to just ask if I can go on the list for a corneal transplant.

Hi Kezz,

Welcome to the forum.

It's good to hear that cxl has halted the progression of keratoconus in your right eye. It is not unusual for cxl to be extremely painful for the first coupl of days, but at last month's KC group meeting, where we discussed cxl, people who had had the procedure were pleased that they had it done.

Moorfield's Eye Hospital leaflet about cxl explains that it can take six months to a year for a spectacle prescription to stabilise.

https://www.moorfields.nhs.uk/mediaLoca ... inking.pdf

Have you tried contact lenses? There are lots of different types of contact lenses on the market some of which are designed specifically for keratoconus. Mild keratoconus can often be corrected by astigmatic soft contact lenses. Specialist lenses are used for advanced keratoconus. You can find out more about the different types here:

https://www.keratoconus-group.org.uk/in ... ratoconus/


Lia

Lia Williams wrote:Hi Kezz,

Welcome to the forum.

It's good to hear that cxl has halted the progression of keratoconus in your right eye. It is not unusual for cxl to be extremely painful for the first coupl of days, but at last month's KC group meeting, where we discussed cxl, people who had had the procedure were pleased that they had it done.

Moorfield's Eye Hospital leaflet about cxl explains that it can take six months to a year for a spectacle prescription to stabilise.

https://www.moorfields.nhs.uk/mediaLoca ... inking.pdf

Have you tried contact lenses? There are lots of different types of contact lenses on the market some of which are designed specifically for keratoconus. Mild keratoconus can often be corrected by astigmatic soft contact lenses. Specialist lenses are used for advanced keratoconus. You can find out more about the different types here:

https://www.keratoconus-group.org.uk/in ... ratoconus/


Lia

Thanks Lia

I am pleased I had it done, and I've definitely noticed certain days where the right one seems better, then other days where things seem worse. My consultant had originally put me in for a contact fitting then I think it got lost in translation and I just ended up with another spectacle eye test, of which he's now scheduled another because of the discrepancy between my scans and the eye test. I think I'll ask there for a definite contact fitting as I struggle with glasses on all day, despite the fact I also struggle administering contacts.

At present I'm struggling with the ghosting so if anyone has any at home remedies or tips for potential causes (dry eye/diet?) they'd be most welcome. I'm really hoping my next check comes before Christmas to alleviate some symptoms as its disheartening the way faces are distorting/ghosting right now and I'm stuck with either a 4 year old prescription pair of glasses or a more up to date pair which make text crisper but more ghosted.

The ghosting will be due to astigmatism. Regular astigmatism can be corrected with glasses but irregular astigmatism caused by keratoconus is usually better corrected with contact lenses.

It can take a few fitting appointments to optimise the contact lens fit and prescription. It's certainly worthwhile asking for a contact lens appointment as contact lenses will probably improve your vision.

That helps a lot thanks, I’m going to take steps to relieve my dry eye, take longer screen breaks and sleep better to hopefully relieve things until my next test, and maybe try and jump straight to a contact fitting.

If you may know the answer to this…so when I have the pre appointment test my vision is far better through the pinholes, would this give any indication as to the best type of lenses for me?

No, pinhole glasses won’t give an indication of the type of contact lenses required.

The shape of your cornea will indicate the type of lens required.

The lens is fitted so that the liquid behind the contact lens effectively neutralises the irregular cornea surface with the regular rigid contact lens surface.