UK Keratoconus Self-Help and Support Association

Hi
I was interested to read about other people's experience when I was considering cxl and there wasnt enough written by the patients. I had cxl done in November and am keen to share my experience in the hope that it may be of help to anyone considering this procedure in future.
I'm about a week away from 3 months since CK and epi-on CXL.
My BCV has changed from 6/9 to 6/7.5 in the right eye, and 6/12 to 6/10 in the left eye.
The SPH, Cyl, Axis was 7.25 -1.75 30 and is now -8 in the Right eye .
In the Left was -7 -5 130 and is now -12 -2.5 150.

I can't really say whether there's been a major improvement but I feel like every where I look things look clearer and lights at night don't look like huge spread out circles overlapping one another. I can see each street light by itself with a distance between them.

In a way I feel I let myself down by agreeing to have CK done . I regretted every time I go to the opticians and am told the SPH has changed.
Both procedures was very comfortable without any unbearable painafterwards. I was surprised that in the first 2 weeks after the procedures I lost a lot of hair and eyelashes but I realised that being exposed to UV light for 30 minutes has a price to pay!
I travelled to LA to have epi-on by Dr. Brian Boxer Wachler and trusted him when he said that he can improve my astigmatism with conductive keratoplasty but I feel that ck was not suitable for me and my vision could have been a lot better with epi- on CXL only. I hope any one considering CXL finds my experience of some value and not be tempted to have other procedures done at the same time.

Thanks for sharing your experience, Wizard. Although it looks like you're more short-sighted, it does seem your overall vision has improved. Clearer vision and single street lights sound like quite a bonus! And I wonder how much of that improvement is down to the CK rather than to the CXL (which mainly is done to stop progression and doesn't by itself necessarily improve the vision). In the UK, combining CXL with other procedures isn't yet that common, though there are surgeons who are trialling various combinations.
Of course, with any surgery, we all react differently and it's not easy deciding what to go for when there isn't a great deal of hard evidence and reliable published data out there yet.
Anne

Hi Anne
It looks like I've posted this twice lol ☺️ Oops!

CK only lasts for a few years and helps temporarily with reading but any damage to the cells is permanent.
It would be easier to judge the outcome in a year when the eyes have completely healed. If I could time travel lol I wouldn't agree to CK and stick with the original plan which was epi-on cross linking .

Well, you added extra information in the second post so don't worry! And thanks for the explanation about CK. And you're right, 3 months is early to judge any procedure - I hope things improve for you as time goes by.
Anne