Progression many years after CXL

[Acacia1]

Hello

I have had kerataconus since 2011, and underwent CXL on both eyes in 2013. My left eye is considerably worse of the two, but I have got by without using any aids. It hasn’t been perfect but the few hard lenses I tried really didn’t feel comfortable.

I haven’t been to have a check up because I moved address 2 years ago and have dropped off the hospital system. The eyes were stable for around 5 years now.

In the recent month my vision in my good eye has started to worsen, and I feel really isolated as I can’t see a private consultant because everything is still shut and the hospital waiting list is many months long.

What possibly could I do? I am concerned about this sudden change and feel there is literally nowhere I can go to get it checked.

Thanks

[Anne Klepacz]

Hello Acacia1 and welcome,
The return of ordinary hospital clinics is painfully slow. But High Street opticians are seeing people now, and some do have an interest/expertise in KC. I don't know whereabouts in the country you are, but have a look at our list of optometrists https://www.keratoconus-group.org.uk/in ... ometrists/ to see if there's someone near you.

[Acacia1]

Hi Anne, thank you for the reply. I have looked into seeing an optometrist, but do I not need to be scanned by the specialist equipment to check the cornea has not been changing lately? Especially with this change coming out of the blue after so many years, would a general optometrist be able to check the cornea itself for the topographies etc?

Thanks

[Anne Klepacz]

That's why I was suggesting an optometrist with a special interest and experience with KC who would be likely to have topography equipment they could use. Some of the entries on our list do say they have a topography machine, but as the list hasn't been updated for a while, many more probably now have one.

[Acacia1]

That's why I was suggesting an optometrist with a special interest and experience with KC who would be likely to have topography equipment they could use. Some of the entries on our list do say they have a topography machine, but as the list hasn't been updated for a while, many more probably now have one.

Thanks, I have now seen an optometrist who was very helpful and knowledgeable about the condition, but didn’t check the topographies as I don’t think they had the equipment. However they mentioned the cornea looks stable. However my vision in my better eye has definitely worsened lately, can I ask would an optometrist be able to tell that just by a regular exam or do I need further investigation?

Thanks again

[Anne Klepacz]

To be able to tell whether things have changed, whoever examines you would really need access to the readings from your previous eye tests and any topography scans. Did the optometrist you saw think glasses or contact lenses could help? Is your current vision affecting anything like driving or the work you do? Any changes in KC are usually slow, so it's probably worth getting yourself referred to a hospital even if the wait is likely to be quite long, though hopefully the visit to the optometrist has reassured you.

[Acacia1]

To be able to tell whether things have changed, whoever examines you would really need access to the readings from your previous eye tests and any topography scans. Did the optometrist you saw think glasses or contact lenses could help? Is your current vision affecting anything like driving or the work you do? Any changes in KC are usually slow, so it's probably worth getting yourself referred to a hospital even if the wait is likely to be quite long, though hopefully the visit to the optometrist has reassured you.

Yes I was feeling reassured but as you quite rightly say until the previous scans can be compared to the latest one then I won’t be able to know if anything has changed.

Do you know how I can get previous scans done at a hospital routine appointment? I was last seen there in 2018, if I ring them can they email it?

The local optometrist said to leave it for 2 months and come back at that point, at this moment the vision has worsened, but doesn’t think it yet affects day to day like driving etc

While he did refer me, unfortunately he said the hospital won’t probably be able to see me for over a year due to their backlog. I have found another optometrist with a topography machine but even they cannot see me until mid September.

[Anne Klepacz]

Your previous hospital should send on your notes and scans to your new hospital. Whether they'll e-mail them to you, I don't know. They should, as we're entitled to see our medical notes these days, but what happens in practice... The only way to find out is to ask - I hope you get someone helpful.