UK Keratoconus Self-Help and Support Association

Hi, a few months ago (around September) I noticed my eye sight changing. Saw an optician who told me that my prescription had changed quite a bit since the last time I had had an eye test, which was only 8 months before seeing this optician. Before this I had never needed glasses and considered myself to have pretty good vision. They recommended I see a specialist so did all that at the end of November last year and they said it was KC, they wanted me to come back after 6 months to assess its progression before deciding on a treatment option (the soonest appointment they could give me was 30th May 2017).

Over the last few weeks I've started to notice having double vision in both eyes. So for example if I'm reading something off a projector screen or TV the writing is quite blurry and then if I close one of my eyes the writing is doubled to the right and below the actual writing. This happens in both eyes when the other is closed and so I'm wondering if this is a sign I should get it seen to again?

I'm worried it's getting bad at a very fast rate and that waiting until the end of May to do anything about it is too long

Thanks

Hi AliRob and welcome to the forum,
The sort of double vision you describe is quite common with KC - the irregular astigmatism produces these distortions of vision. Did the hospital mention collagen crosslinking as a possible treatment? To get that on the NHS, there needs to be evidence that the KC has progressed over 6 months, and that's usually done by doing a corneal topography at the first visit, and then again 6 months later. Were contact lenses mentioned as a way of correcting your vision? Rigid contact lenses restore a smooth surface to the cornea and should get rid of the double vision.
You wouldn't be able to get the CXL treatment earlier than May, but if your vision is getting worse, it would be worth talking to the hospital about whether contact lenses would help in the meantime.
If you'd like our information booklet about KC (written for us by Moorfields specialists) do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you a copy.
I hope that helps.
Anne

Just to add to what Anne said... did they do, as mentioned, a topography scan on a Pentacam machine? I wasn't aware you had to wait 6 months on the NHS (I had it done privately as it was the only option at the time) but if not, you need to get that done as soon as possible because it'll be 6 months on from that point; at least!

Maybe it doesn't work for everyone, I don't know. But don't listen to the 'earliest appointment available' spiel. I wasn't happy with mine so walked into the eye clinic guns blazing, but still politely lol, and demanded I speak to the manager. Which I did within 10 minutes and after explaining the situation they managed to miraculously bring my appointment forward by several months! I'm not a confident guy at all, but I felt I needed to be seen earlier, so well that's that.