A small joy, maybe miracle

Come Sail Away With Me
November 4, 2013
Scrivener and Android
December 25, 2013

Writing hasn’t been my main focus (no pun intended) for the last month or so. I’ve had to do my normal computer work stuff as well as recovering from eye surgery. Nothing out of the ordinary in one respect, just cataract removal. Very unusual in another since it was an eye that shouldn’t be functioning as well as it is. Though I had to be reminded of that this week during my follow up appointment.

I’ve had messed up vision for most of my life. Uncorrected, I could be considered legally blind. Corrected, I saw almost 20/30 in my right eye and about 20/100 in my left. And when we are talking corrected, we aren’t talking glasses, but three contacts.

English: Scheme of keratoconus compared to nor...

Scheme of keratoconus compared to normal cornea (Photo credit: Wikipedia)

Why three?  Well, my left eye suffers from, among many other things, something called Keratoconus. Basically, it’s where your cornea thins and becomes like the pointed edge of a snow cone. This, of course, distorts your vision. To overcome this distortion, I’ve been wearing two contacts in what’s known as a piggy back system. The soft lens protects the eyeball and the hard one flattens the cornea. The right eye just has a soft contact to help balance it with the left as well as take care of a little astigmatism.

I thought I was going to be stuck this way with until my doctor said “Hey, you know what, your problems are caused by malformed lenses. You have a good optic nerve and retina.” At the time, I couldn’t do anything, because I was still functioning, so any sort of corrective surgery was considered. 

Then about two and half / three years ago, my right (good) eye started failing. I had a cataract. When it got to the point where I couldn’t drive, the operation became necessary. I remember after they replaced the lens and put the flap back in place, I looked up at the surgeon and said “You have eyebrows.” The whole surgery team cheered because they had made a very near sighted eye, slightly far sighted.

The right eye being so vastly improved was both a curse and a blessing.  I could see without anything, but sometimes my brain struggled with seeing clearly while also dealing with total distortion. With such a large discrepancy in the vision between my two eyes, my brain had constant arguments with itself unless I wore my contacts. At one point, I wanted to wear them 24 hours a day because it was such a relief. Of course, I couldn’t, especially on the left eye. The hard lens prevents good oxygen flow and therefore can cause tissue damage.

I talked to my doctor about this and we came to the conclusion that cataract surgery was a good starting point. It wouldn’t cure me, but it might bring me back into better balance because it would replace my naturally bad lens. They didn’t have to wait for the cataract to ripen like last time because of the mental anguish. But they did have to find a way to strengthen the cornea first, since the surgeon would have to go through that layer in order to replace the lens and they didn’t want to aggravate the Keratoconus.

I went through an experimental (at least in the US) treatment called Collagen Cross Linking (CXL). As far as I understand, there are two versions of this, surgical where they remove a layer of the cornea and non-surgical where they don’t.  Either way, they douse your eye in Vitamin B for an hour and then expose it to ultraviolet light for 30 minutes. I had the non-surgical kind, but after sitting the chair for a couple of hours, I felt like a smooshed pretzel.

At first I was a little skeptical that the treatment had worked and I was willing to accept that.I had been living with my condition for 12 years since being diagnosed. I figured if I was going to be the failure, at least I would give the doctors a time limit of effectiveness.

Well, the treatment worked. I ended up having surgery on my left eye a little over a week ago. Of course, I wasn’t expecting the miracle that I had gotten in my right. I just wanted to be able to see clearly. But I didn’t get that. What I got was apparently the same vision that I had before the surgery. Or so I thought.

Turns out the Keratoconus was still playing its normal havoc. They can get around this by doing what’s known as a pinhole test. Using this method, I was able to guess one letter on the 20/70 line for the first time in my life with my left eye during my second follow up appointment. Vast improvement?  For that left eye, most definitely.

Now, I’m just waiting and healing to see what the final results will be. I”ll still have to wear contacts to see clearly with both eyes (though there might be a small possibility the right one won’t need one). Getting refitted for those in a few weeks. The prescription will definitely be different, lighter actually because the internal lenses will carry most of the load. It’ll be interesting to see (no pun intended, again) exactly what my rating will be. Of course, I’m hoping for the 20/70, at least.

I keep teasing my doctor that they need to write an article or two on me. It’s being a running offer / joke that I’ve had with all my docs over the years. I’ve already being an interesting glimpse into overcoming Murphy’s Law for a few interns that have shadowed the docs. The fact that I’m seeing as well as I do with what I have defies most logic. And If my weird combination of eye problems can teach someone so that they can in turn help someone else, or maybe even a few someone elses, even if I don’t know who those people are, I will have done something good with my life.

5 Comments

  1. Ani, I hope all of these interventions prove successful. People with good eyesight and hearing don’t appreciate the good fortune they have in life. (I speak from personal experience: I have been deaf in one ear since birth, and now wear a hearing aid in the one ear that functions.) You have endured many years of suffering, and have faced daily challenges that many young and middle-aged people cannot fully comprehend. You do not seek the sympathy of others. Rather, you wish to share your story with those who are similarly in need of courage and hope. Please keep us posted.

    • horsecents says:

      Thank you for your kind words.

      Just a quick update as you requested. Saw the doc on Monday and we are now in the “let’s go get a cornea map” phase. The map is topographical and will show them the shape of my cone. Based on that, they will fit the hard lens. It might take a couple of tries, both for the comfort of the lens (due to the shape of the cone) and the prescription as the they will be guessing (in a scientific way) since they never can get a clear reading on that eye.

  2. I’m glad your CXL went well. I’m also in the States and had bilateral CXL over a year ago and am beyond a weird case, too. Oh, I love the snow cone description and may have to borrow that one. Lol.
    A 🙂

    • horsecents says:

      I actually got that from the doctor who first diagnosed me back in 2000. I find it’s the easiest non-technical explanation of what’s going on. So borrow all you like . . . 🙂

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