Recurrent Corneal Erosions

What was I saying about small victories, big celebrations? Yeah, forget that. Recurrent corneal erosions don’t give up that easily, apparently. We’ve moved on to phase three of the battle, and it’s getting ugly. This, in addition to my spat with Facebook, is why I haven’t been around as much, lately. Sometimes, my eyes are really hypersensitive to light emanating from a phone or computer screen.

I had my son drive me to the ophthalmologist this afternoon – the same doc who said, “See you in two years,” last November.

“Sorry. I couldn’t hold out that long,” I explained, wondering what the hell I was apologizing for. This time, the nurse could see there was a problem before the ophthalmologist put in the stain and looked at my eye under the slit lamp. I could not see any letter on the chart – not one. They seemed unsurprised, but sympathetic, when I said I’d been having erosions nightly – usually twice nightly – since the first of the year. “I need sleep,” I said. Knocking myself out with a two-by-four seems a viable option, some nights. According to the sleep app on my phone, I’m lucky if I get 3-4 hours’ sleep a night. REM sleep seems to cause erosions, and apparently I go into REM around 2 AM and again around 4 AM – if I sleep at all. I think I’m afraid to sleep, and it’s causing a sleep disorder.

If you’re super squeamish, click off now – there are other things for you to read on this blog. If you’re curious about weird eye disorders and treatments, keep on reading.

From their reaction, compared to their reaction in November, I’m now picturing the surface of my cornea looking like a skinned knee that’s been dragged half a block across rough concrete – every night. Remember that this “epithelial layer” is just a few cells thick, but there are lots of tiny nerve endings on the cornea, just below it. It heals fast – sometimes in an hour or so – and leaves me feeling like poor Prometheus, chained to a rock, having his liver eaten out by an eagle each day, and having it grow back each night. Not that anyone described it this graphically, but that’s what it felt like, yesterday, and after a quick look, we’ve moved on to a “bandage contact lens.”

Here’s where Google’s not always your friend. “But–um,” I hate to contradict the doc on flimsy evidence, but having read things like, It hurt so bad that night I had to go to the ER to have that thing removed, I did have to ask if it was the best option and just how bad this was going to hurt.

The doctor looked at me like I’d grown a second head. A tiny, talking, shrunken head. “You haven’t heard that from any of my patients!” he insisted, with just a tiny twinge of incredulity and indignation, mixed. “In fact, it’ll numb the cornea – most people get immediate relief from the pain.” The look of mild horror on his face suggested that toughing it out without taking his suggestion was a horrible idea.

“OK, then, I’m game…” Inwardly, I was cringing a little, but I had to admit that numb was better than having the surface of my cornea scraped with a spatula or a diamond burr. And that is the likely next step, if this doesn’t work. Pain relief through a “bandage contact lens” also sounded saner than pain relief by digging out my own eyeball with a rusty spoon – which is something I’ve fantasized about doing at least twice in as many months.

Turns out this “bandage contact lens” is…a normal two-week Acuvue lens. The only problem I’ve had with these lenses in the past is getting them into my eye – they’re too thin. They fold into little invisible origami shapes at a droplet of saline solution. I’m thinking whoever had to go to the ER to have it removed probably never wore contact lenses in their life. I wore contacts from the time I was 12 until I was in my 40s. I started with the rock-hard lenses of the 1970s and moved through soft and gas-permeable lenses. I once wore a pair of extended-wear lenses for four months straight. If this is painful, it’s not the lens’s fault. And so far, it’s anything but painful. It’s awesome.

I really wish I could go back to wearing contact lenses for my vision; unfortunately, there’s no good contact lens for usĀ  astigmatic, trifocal, progressive lens wearers. So right now, I’m wearing a single contact lens that does pretty much nothing and a pair of old glasses. I still can’t see much out of my right eye, though it’s more than I could see when I walked into the doctor’s office and I feel like I may live. (We’ll revisit this in the morning – it could be a rough night, if my eyes dry out with the lens in.) It’s too soon to tell if this will work, long term. Keep your fingers crossed.

I had such high hopes last time.

 

[UPDATE 2/25/16: I still can’t see much through my right eye, but I think that’s just one of the drops, making the contact lens cloudy. The doctor told me to expect that, and may discontinue those next week. It’s better. But most importantly, I got the first decent night’s sleep I’ve had this YEAR. 6 1/2 hours! Not a deep sleep, but I remember dreaming – I even remember the dream. And I only woke up once – at 3:39 AM – but not in pain. Just too hot! The heater’d kicked on.]

[UPDATE 2/29/16: I can at least tell that there are letters on the screen! Saturday night there was some significant improvement – which, ironically, brought on a headache and some nausea, like getting used to new glasses. Most of the spiderwebbing around bright lights has disappeared or reduced to small sircles, and I can see well enough with both eyes, together, to feel entirely comfortable driving. I’ve also slept pain-free, through the night, every night since posting this! What a luxury, sleep.]

[UPDATE: 12/1/16: It’s been a while, hasn’t it? After a spring and summer of ups and downs, I think it may finally be safe to say that I’ve found one thing that works, thanks to product placement (found it at Walgreens next to the drops my doctor had recommended I try) and recommendations from the Recurrent corneal erosion Facebook group: TheraTears Nutrition Omega-3 1200mg supplements. I have finally gone a full month – for the first time in a year – without any corneal erosions. This is not to say I don’t still have to “unglue” my eyes in the morning with saline solution, or that I’ve stopped wearing the contact lens in the worst of my two eyes. But it’s been long enough to confidently say it’s not just a fluke.]

HollyJahangiri

Holly Jahangiri is the author of Trockle; A Puppy, Not a Guppy; Innocents & Demons; and A New Leaf for Lyle. You can find her books on Amazon at http://amazon.com/author/hollyjahangiri. For more information on her children's books, please visit http://jahangiri.us/books.
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9 thoughts on “Recurrent Corneal Erosions”

    1. Thank you, Vivian! I appreciate that. The good news – I’m not dying or going permanently blind. I probably won’t need injections into my eyeball (you know this is always a HUGE worry for me, the way I feel about needles!) It’s really just PAINFUL and ANNOYING and I hate not being able to see, even knowing it’s likely temporary (since I don’t know just exactly how long “temporary” is – hours? Days? Weeks? Months?) Until this happened, I’d never even HEARD of RCE. Now my husband knows four people who have it!!
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    1. Thank you, Alicia! (I just now saw this, hiding in moderation – sorry!) Yes, it’s right up there with childbirth, isn’t it? Imagine having two a night. So far, so good – although I’m pretty sure I’ve tugged at it, if not ripped it off, under the contact lens, the lens is at least letting me get a decent night’s sleep. That’s unimaginably important, when you’ve been averaging about 3 hours a night for MONTHS. I’m pretty sure my doc’s right – he’s a corneal specialist and had great reviews from patients on Yelp. (Kidding, it wasn’t Yelp – at least I don’t think it was Yelp. Anyway, I like him. I was a little reluctant to be a big weenie and go back this past week, after his last words to me had been, “See you in two years!” but I think, now, he meant “If the drops work and all.” He seemed surprised I hadn’t come back sooner.
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  1. Holly – I cannot even imagine this. I have always worried about going blind. Won’t have that laser stuff done on my eyes, because I KNOW my glasses work and what if eyes change in time? You need more surgery… or just new glasses. Well, the glasses are cheaper and more acceptable to me. And I am the only one that matters there, right?

    When you said this should be temporary, you made my day. I am praying for your comfort and fast healing.

    1. Thanks! Exactly why I’ve never had eye surgery, Renee. I sat through the informed consent video, years ago, and literally sneaked out of the doctor’s office before it was over. The risks are terrifying, but more than 30 years have passed and I’m pretty sure they’re even better at it these days. I’ve never known anyone who was really unhappy with the results they got–including several from 30 years ago. But my vision’s always been correctable to 20/20,so why risk it? I see why, now. This is freaky, with the glasses not working. If I needed surgery to correct this, I’d do it.

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