THE SUN IS BURNING MY RETINAS & OTHER POST-CXL OBSERVATIONS

Image Source: http://www.brooksidepress.org

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.

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8 thoughts on “THE SUN IS BURNING MY RETINAS & OTHER POST-CXL OBSERVATIONS

  1. dyspatient says:

    Glare and the southwest. I hadn’t thought of that, but wow, that would be tough. I’ve been wishing for tinted glasses this week. It’s been a migrainey one and I feel foolish wearing sunglasses indoors. Not at home but at work, for sure. When I do find a good eye doctor, I am definitely going to talk to them about tints.

    Hair – It is so creepy to find a small animal sized ball of hair in the drain after every shower. I’ve been dealing with this too and boy does it stink. I hope as you get further away from the steroids, the loss will slow!

    • I seriously just posted this and am aware what time it is out here… Lol! I’m a vampire and have some serious problem in that area, too. I haven’t gone to bed yet!

      Get some cool, tinted glasses. I love huge, ’70s styles personally and wear my sunglasses like I’m a movie star. I saw some wicked Dior ones but they were like $500! Avoid anything that looks like Jim Jones, Jeffrey Dahmer, etc. Not good. I have a weird cousin (once removed) who wears those and is creepy.

      The hair is making me insane. I read you had that issue on your blog, too. I have a lot of hair but it looks awful. I also have a low thyroid but it’s been doing great for yrs with the right dose of levo., unless it went wacko again. Otherwise, I’m blaming the steroids still.

      Thanks for reading my post. Would have given you more recognition for all your help but was worried everyone would hit you up. 🙂

      • dyspatient says:

        Aw, thanks. I saw that and was happy to have the info disseminated. Not an issue where it comes from. I wish more people were aware of the ways that their personal tech can be modified to make it usable (I say as I sit at a computer with the brightness all the way down and a rather pricey split keyboard nestled on an adjustable tray that I still haven’t gotten exactly right).

        I think (fingers crossed) my shedding is slowing somewhat. I am going to put the credit on finding a multivitamin I can tolerate and removing a few extremely offending foods from my diet. So nice to actually digest my food again, for the most part. Looking at my desk, I see only one stray hair lying there. For a long time, it’s been at least a dozen on casual inspection. Lucky me with my good eyesight….all the better to see so many of the hairs that fall off my damned head!

  2. You’re welcome and I wish more people knew, too. So, you gave me something to write about! I did get a newsletter from our organization (NKCF), but nothing worked for me–perhaps due to everyone having a different computer/OS, etc. I did figure out how to blow up Chrome on my own as I mentioned, which helped, but things are way better now.

    Glad you figured out the cause of the hair loss. It is important! When it happened to me when I 1st got sick in ’01, I had no clue as to the cause but was well below 100 lbs (scary!) since the pain made me throw up all day. Finally a good doc (what’s that?) took my TSH levels seriously and put me on low dose levothyroxine and it came back.

    I have huge, curly hair so I can lose some, but when it’s over 50%, even I look terrible. I think it’s from the steroid b/c the texture went from coarse to Brillo pad and is a tangled mess of split ends, which I never get. I can’t even get shampoo/conditioner through it. It’s like a big octopus on my head. I’ve resorted to the “top knot” style and call it a day.

  3. Haseefa says:

    Hi there,

    I will be getting cross linking treatment done in 2 weeks and I would like to know if you had to wear sunglasses after the treatment?

    • Hi Haseefa,

      Yes, you will probably have a lot of light sensitivity following cross-linking and that happens with corneal surgery in general. I would suggest avoiding light (sunlight and bright indoor lights) for the 1st couple of days for sure. Your surgeon should give you a pair of very dark, disposable glasses so that you can get home from the clinic and those will help much more than regular sunglasses. For some reason, my light sensitivity never went away, but it did improve. It’s a very rare side effect so I wouldn’t worry about it happening to you. Best wishes on getting CXL; it’s well worth it!

      Take care,
      A

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