So I've been a little remiss in keeping y'all updated on what's happening with my eyes. For those that missed this earlier, my optometrist was thinking I had a condition called pellucid marginal degeneration (PMD). Further investigation revealed, however, that what I have is actually its somewhat-more-common cousin, keratoconus [LINK WARNING: pictures of strange-looking eyes]. Both PMD and keratoconus are conditions in which part of your cornea gradually loses thickness over time.

Like PMD, keratoconus is still very rare (maybe 1 in 2000), but not quite as rare. As far as science knows, it's genetic-ish (there's a roughly 10% chance of inheriting it), but it can be exacerbated by environmental factors—there's a strong correlation with allergies.

Also like PMD, it's degenerative, but there are recently-developed treatments which can stop or slow the progression. One such family of treatments is corneal collagen cross-linking [LINK WARNING: More weird pictures of eyes], or CXL. The FDA recently approved an "epi-off" version of the CXL procedure ("epi-off" meaning they remove a layer of cells, which will later grow back), but there are also experimental "epi-on" versions which are safer and have shorter recovery times.

After a lot of research and investigation over the last 5-6 months, I decided to go with one of the epi-on clinical trials. Science still isn't sure if the epi-on versions are as effective, or what the appropriate dosages/timings/etc. are—that's what this trial is trying to find out.

But if I consider the fact that my eyesight is still quite good with glasses alone, and weigh the safety risk of the FDA-approved epi-off version vs. the risk that the epi-on version won't work, the epi-on version seems like the better trade-off. Even if the epi-on version doesn't work, I can go back and do the epi-off version later, and my eyesight likely won't have deteriorated enough by then to cause me any additional problems. My uncorrected vision would get a little bit worse, but not significantly-so as long as I get tested regularly.


With that decision made, I had the experimental procedure done a few weeks ago, on March 6th (Tuesday). Everything went smoothly, and while the recovery process was painful, I was mostly back to normal (and working from home) by that same Friday.

It will be a while—probably a year—before we know if the cross-linking actually worked. In the meantime, I can expect my eyesight to gradually get worse for about a month or so, and then better again until about the 3-month mark, at which point it should be back to where it was before. Over the following 6 months to a year, it may even get a little bit better than it was, although that doesn't happen to everybody.

Longer term, I'll need to wear rigid contact lenses for the rest of my life. I have glasses now, and they help a lot, but they can't fix the starbursts/halos I see with bright lights at night. And for someone who likes to drive (especially at night), that's a big problem.

For now, though, I don't get to even consider contact lenses until my vision settles down (likely between June and September). And in the meantime, I'm going to have to be particularly careful at night. But at least I have a path forward, and a lot more certainty about what to do next, and what to do if it looks like the experimental treatment didn't work.

— Des

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Des

August 2018

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