It seems like it was just yesterday that I had bilateral, “epi-off” cross-linking (CXL), but I am just shy of 5 months post-op this week. My recovery has been beyond slow and rather atypical, so please don’t assume you will have the same issues. If you are having them and found my post, then great—there are more of us out there.
As I’ve mentioned in prior posts, I have an unusual form of KC that hits later in life and progresses extremely fast. Also note that thanks to keratoconus, which did have a silver lining, I was finally diagnosed with Ehlers-Danlos syndrome (EDS)—a genetic connective tissue disorder that presumably caused my KC and is also causing the slow healing.
Aside from the pesky dry eyes, which I wrote a whole post on, my biggest gripe at this point is with light sensitivity. It has slowly improved with time, but it just seems abnormal to be dealing with this problem still, although a fellow blogger who had her CXL around the same time as mine has the same issue still, too.
Following CXL, any light source was a problem and I saw sparklers and halos around anything that emitted light. Then there is glare, which I lump into the same category and is still a bit of an annoyance now. However, I recall not being able to even look into the silverware drawer the week I recuperated from CXL at my mother’s house. So, as long as I’m not dealing with glare from the sun, I won’t complain about trying to sort through my coins.
At this stage of the game, I have two big grievances with light sensitivity. The first involves using a computer due to the bright, white screen. For weeks after CXL, I couldn’t even open my laptop, but it’s still a nuisance now even if things are getting better. I’m not an IT person, but one of my fellow bloggers—who doesn’t even have KC—really helped me out with her comments. She suggested I adjust my screen’s brightness and other tips. Seriously, if you’ve never dealt with this, why would you think such an option existed on your computer?
Needless to say, one problem has been semi-resolved and I also learned I could blow up my entire operating system! That has been great since I can’t wear contacts still. If you have a PC, you can easily tinker around with your computer via Control Panel > Appearance and Personalization > Display (or at least that’s how it is in Windows 7 land).
My second issue involves seeing things outdoors during the day and driving. Regarding the latter, I can drive at night now although headlights are irritating, but I absolutely cannot drive in the day due to the sun. I live in the desert SW of the U.S. and the sun is usually a big ball of intense light, even though it’s freezing cold now. I get a “whiteout” effect—almost as if I were constantly driving west as the sun were setting.
The other odd thing is that while I’ve had this massive improvement in my visual acuity, I have typical, keratoconus vision with ghosting outside in daylight, which just adds to my reluctance to drive. This has improved drastically too, but before CXL, I could get one good drive in 1st thing in the day. After that, I shouldn’t have even been on the road.
I am still healing and my vision is still fluctuating a bit, but I have stable vision throughout the day due to the cross-linking and that is wonderful. I also am noticing that I am starting to be able to read some “fine print” on things, although if it’s too small I struggle and get a headache between my eyes.
While my visual acuity jumped to 20/400 post-CXL, I’m currently at about 20/40 in both eyes, although that last line is a struggle to read. Pre-CXL, I had monocular vision and was only using my better eye—now my slightly worse eye, which was at 20/60 and rapidly progressing like my other eye, which was no longer functioning. Sort of confusing. I wish I could explain it all in diopters, but the clinical trial follow-ups don’t seem to include a refraction.
So, aside from the horribly dry eyes, my hair that is still falling out from the steroid drops months after stopping them, and the light sensitivity and inability to drive a car during the day (huge problem!)—I am so glad I was able to max out my credit card and be one of the lucky few to get into a CXL clinical trial in the good ol’ US of A.