UK Keratoconus Self-Help and Support Association

Hi,

As some of you may remember I had CXL done in my right eye and a DALK in my left eye.

My left eye is getting decent vision, 4 months or so after the surgery. Although it does take a second or so to really focus. I feel it is getting stronger and that I'm managing it ok.

My right eye is my concern. I'm starting to notice more ghosting than I had before. I had this done privately. When I went to see my NHS consultant last week he told me the vision in that eye is the same as it was back in April. I'm not sure if this means the progression of KC has halted in that eye. How would I know for certain? My local NHS hospital can't tell me as their machine is broken...

I have of course got in touch with the surgeon who carried out the CXL and, after a rather aggressive conversation (not on my part) I managed to secure a consultation although I have noticed that they now advertise and carry out the procedure in a different way. I was given a number of drops to take over the weekend and that was it - they now advertise 4 weeks of drops following the procedure. I'm starting to worry that I was a guinea pig and that perhaps the CXL has not been as successful as I had once hoped.

One last thing I'd like to mention. In August I woke up on a couple of nights and noticed, literally, flashes of light coming from objects in my bedroom. I recently read that this is due to detachment of something or other at the back of the eye. Has anyone else who has had CXL experienced this? Also, how long were you on drops for afterwards? Does the DALK have any effect on what is happening to my right eye?

Finally finally, when will my brain start using both eyes together? It seems my left is getting stronger which, at the moment, is actually making my overall vision worse.

So many questions, which I apologise for, but any advice most welcome.

Hi, there is a lot going on here.

Firstly, let me say that there can be no direct affect than a graft on one eye can have on the vision in the other.

As to your CXL eye, I wonder whether you may need contact lens on that eye? CXL may have stabilized the condition, and may have provided a better platform on which you can now sit a contact lens.

Every good wish.

Andrew

Hi

Sorry to hear that you're experiencing problems with your CXL eye.

As you know, I had crosslinking in both eyes, followed by an auto lamellar keratoplasty (I was told that this is basically exactly the same procedure as a tranplant, but using my own tissue). Different surgeons did the crosslinking and I was aware that their methodology differed and as a result one eye was pain-free whilst the other was incredibly painful. Basically, one surgeon punctured the epithilium to a greater degree than the other (I recall how eye time I blinked, it felt like sandpaper!).

Must say that 5/6 months on, I would say that my vision is only just regaining some sort of normality. I am able to read and my computer screen is no longer touching my nose!!! So in that respect, I know my vision has improved. However, in terms of how both eyes work together, I'd struggle to say outright that my expectations have been met. I think that's mainly because my vision wasn't great for such a long time that my brain got used to it. Now it's having to readjust again and that's taking a bit of time. In addition, my right eye (the one that I had the ALK) is still recovering (in the right direction). I think it's going to take quite a while. Obviously, I'm not expert so cannot put your mind at rest (because everyone's different), but I've felt unprepared for what to expect – I was told I could go back to work within a few days post-CXL and after a week for the ALK. In honesty, that's been completely unrealistic. Going from what I've experienced and from others have since said, it does very much seem like it takes months for vision to recover from CXL (and then there's added recovery time for any other procedure/s).

Best wishes.

C.