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Here is the good, the bad, and the ugly of my experience following cross-linking (CXL).
To learn what it’s like to get cross-linking surgery, you can read my post I GOT CROSS-LINKING!
Please note that everyone has a different experience with CXL. I just had my 3-month, post-op follow-up with my local ophthalmologist as required by the FDA for the CXL clinical trial I was in. However, I haven’t written about my experience with CXL post-op in detail, so I’ll start there. Again, this was my experience and it’s not typical. I saw a top surgeon in Los Angeles, but my body has a strange reaction to about everything.
I had unremarkable, bilateral cross-linking surgery in the late afternoon and was given anesthetic drops mixed with a medication to dilate the eyes to take home, which is supposed to help with pain. My doctor mixes these drops, as they aren’t readily available in a pharmacy. I also had a steroid eye drop to start on day 5 and an ocular NSAID for pain. I was told that some patients have little pain and some are in agony, and I guess I was unlucky enough to fall into the latter category.
I got back to the hotel with my blackout sunglasses and noticed that I had 2 black eyes—common for me and a shock to my doctor. I also had red, irritated eyelids and my right eye was bloodshot from surgery. I immediately started using the numbing drops and the NSAID drops as often as my doctor said I could. I was very uncomfortable and it felt like acid had been poured into my eyes. I had to sleep and shower with special goggles but I hardly slept as I woke up every hour from the pain and had to put in more drops, so it was a long night. The lights were killing me and my vision was worse, so trying to get into the hotel bathroom with the fluorescent lights was not fun.
The alarm woke me up very early again for my post-op appointment the next morning. Aside from the eye pain (still doing those drops 3 times an hour), I was feeling really nauseous but managed to get cereal and tea down. We packed, checked out, and headed back to the doctor’s office. My nausea was getting worse by the minute. The parking was in a hot, humid, underground garage and suddenly I was crouched on the floor as the blood rushed out of my head—I tend to pass out when I feel really sick. I didn’t want to get into the elevator but had to get out of that garage and into a bathroom, STAT! I remember the bathroom being in the hallway and needing a key, but luckily a woman was coming out and I just grabbed the door, ran in, and threw up about a dozen times in the toilet—and I never throw up! It was horrible. Well, aside from my eye pain, once I cleaned myself up, I felt much better. Sort of reminded me of why I don’t drink.
I was rushed back to see my doctor, who did an eye exam and said everything looked okay. He thought I was sick from the Vicodin, but I told him I had refused the Rx because I do get sick from narcotics. I think if I could have taken 2 days of narcotics, the eye pain would have been much more tolerable. So, he figured it was my body reacting to the pain and put more numbing drops in my eyes—the same anesthetic ones I had with me and had my eyes doused with in surgery. I had a few more things to do there and then was free to go and head back with my mother to her home 2 hours from L.A.
Well, guess what? I got nauseous within 5 minutes of my doctor putting those numbing drops in, so now I knew what the culprit was. I get very sick from general anesthesia so I suppose that nearly 24 hours of those drops was enough to make me sick. Then I had to get in a car while wanting to throw up, all while being stuck in L.A. traffic on the freeway. I remember putting something over my glasses to block out all light and I reclined the seat and somehow made the trip back, which took about 3 hours due to the traffic. I kept the NSAID drops nearby and used those every hour to help with the pain.
When I got to my mother’s house, I went straight to bed, which is what you’re supposed to do right after surgery, not 24 hours later. It’s hard to get comfy with those goggles you have to wear and sleeping was hard since I was still waking up every hour to put in the NSAID drops. I used Acuvail, by the way. Actually, I normally can’t sleep without Ambien, but after days of 4 or 5 hours of sleep, I was able to take a nap.
I woke up and remember having chills and chattering teeth, just like when I’ve had general anesthesia, so that sealed the deal that it was the drops that did me in. Again, most people don’t have any problems with anesthetics and won’t deal with any of this. I know I washed my face that night. I wasn’t supposed to get my eyes wet for a while so I had my goggles on. I must have eaten something—wish I could have seen and taken notes—and went to bed with my Ambien. The 2nd night I woke up at least 5 times from the pain and to douse my eyes with the Acuvail and lubricating eye drops, but the pain was better than the 1st night.
The next day, which would be day 2 post-op, I stayed inside and felt like I had the flu. I would say this was the medication still lurking in my body and have never heard of any of these side effects. The lights were bothering me at night inside the house (not horrible) and the glare from the silverware drawer was quite bad. Again, I was using the Acuvail every hour still and my vision, as expected, was getting worse. That night I woke up maybe 3 times from the pain, so things were getting better, even though my vision was getting even worse. I think it was the 3rd day that I finally felt like I wasn’t under the weather and even though the pain was still bothersome, I was almost sleeping through the night.
I returned home by car on day 5 post-op. The pain was better but my vision was so distorted I couldn’t see a thing, which I assumed was due to my liquid bandage contact lenses being so dirty and full of all the medications. I had also started the steroid drops, but all seemed okay with that. The several hour drive home at night was like the 4th of July. I couldn’t make out anything but the lights, which all looked like sparklers and fireworks. I had my drops handy and was still on those every hour, with my doctor’s permission. I got back home and thought I just had to wait until the next day to see my local ophthalmologist for my 1 week post-op and to have the contact lenses removed. Yay, only one more day of those goggles.
Well, things didn’t turn out as expected. I saw my doctor who went into alarmist mode since my epithelium hadn’t healed. The cells had partially grown back in my right eye, which had better vision now, and hardly grown back at all in my left eye, which came in at 20/400. So, no getting the contacts out. He scheduled me for a recheck in 48 hours and if things weren’t better, he was going to have to put something over my cornea in my left eye to get it to heal. He blamed the dry, desert air and of course, we all have A/C going when it’s over 100°F.
I decided that if I doused my eyes with my liquid gel drops every 10 minutes and taped my eyes shut before bed—they’re half-open when I sleep—that I could get the epithelium to heal in both eyes and it worked! I got the contacts removed (no difference in vision and I’d actually lost one contact from all the drops), got permission to sleep and shower without goggles, and was on my way. My vision was dramatically better with the epithelial cells back on my corneas, too—well, not 20/400 anymore. I thought I was over the hump.
Not so fast. My dry eyes had now entered the no-tear-production zone and I was an achy mess—worse than normal—and having horrible night sweats. I have problems with oral steroids and get those symptoms minus the dry eyes, so at day 17 I finally got off the steroid drops after talking to my doctor in L.A. and my symptoms were gone, except for the horribly dry eyes.
My right eye, which was my worse eye pre-op, had great improvement from the surgery and I have somewhere between 5-7 lines of improvement in my VA. My left eye, which is healing much slower, currently has about the same VA as pre-op, so I’m much more symmetrical and have binocular vision again. My VA will fluctuate for 3-6 months so I still have a ways to go. I also no longer have worsening vision as the day goes on. How I see when I get up is how I see when I go to bed. How nice. So, with that right eye I appear to be the poster child of CXL, but I have this slow healing of my epithelium and the severe dry eyes that have left me using ocular ointment (yes, essentially Vaseline) in my eyes every 30-60 minutes. This is apparently not a normal side effect and I’m wondering if it will ever go away so I can get contacts and not have to explain to everyone why my eyes, eyelids, and eyelashes are so shiny. Not to mention my eyes hurt!
So, this is where I am 3 months post-op and I would hardly say it’s normal. I can’t drive during the day due to the light—a whiteout effect of sorts—and I rarely drive at night since my depth perception is still off and I just can’t see well enough. Near work is still impossible, but I finally figured out how to blow up the font on the internet via Google Chrome and I write my to-do lists with Sharpies and big sticky notes.
I sure wish I could see to pluck my unruly eyebrows and file my nails, but I guess I shouldn’t be so petty. I could be blind, after all.