Tuesday, April 30, 2013

A Not-so Brief History of Medically Everything

It's high time I spilled the beans on my medical history, to provide some relevant context and reinforce one of the important themes of this entire blog - take charge of your own destiny!

To begin more concretely, it all started when I was born. It was clear pretty quickly to my parents that I was not responding visually to their cues, and after a few weeks they took me to the doctor, who concluded I had congenital cataracts, a whiteness that covered the eyes and prevented me from seeing anything at all. I had a surgery when I was 8 weeks old to clear out the opacity by essentially poking holes in both eyes and trying to clearn it up. Nowadays they can peel the damn things off with a laser, but in 1971 their choices were very limited. The surgery was remarkably successful, though the cataract returned in the left eye. They had to do the same surgery again in that eye several weeks later.

This condition provided the obvious genesis for my visual challenges in two important ways. First, my eyes were completely covered during a time of critical neural development, providing NO visual information to the brain. It is believed that the visual area of the brain is likely undeveloped in comparison to a normal person. Second, the surgery itself caused damage to the eye, lowering my visual acuity and likely causing (or at least contributing to) the nystagmus I've had ever since. Since the surgery was done in the left eye twice, its visual acuity is even lower, rendering it far inferior to the right. My strabismus (lazy eye) was likely caused by the fact that the brain was trying to focus on the input of the good eye, and ignore the poorer signal of the other. The turning in of the eye is a means for the brain to try and ignore the bad eye's input.

Incidentally, for my whole life I did more or less try to pretend that my left eye didn't exist. It has always caused a distraction. I often close it out of habit. Interestingly, my impulse to do this has dropped to zero post surgery. For years I didn't wear a left contact lens, feeling like additional acuity in the eye caused exhaustion and terrible distraction.  I was even half-serious when mentioning to Eliza that if the only thing a surgeon could do for me is rip out my left eye and replace it with a glass one, I would do it. One thing I did know is that I was still seeing out of the left eye, and consistently so. This of course was endlessly frustrating to me before, but I believe it was a critical piece of what allowed me to be able to have the two eyes work together. Apparently other patients experience a total shut-down of the eye, or at least even more diminished than even mine, and that they can never get that eye to cooperate. Another way in which I was in the end insanely lucky. The eye was ready to do the right thing when it was pointed in the right direction. Miraculous.

Anyway, I was put on a solid treatment plan after the surgery. My mother was instructed to have me wear contact lenses as soon and as much as possible. Let that sink in. Contact lenses. On an INFANT. My mother tells stories of pinning me down and bracing my head to get the lens into my skull. I would start to cry and rub my eye and POP it would fall out, leaving my parents diving to the floor to find it. As a parent of a three year old I could not IMAGINE trying to get a pair of contact lenses into a kid that young. And I remember from starting lenses again in high school that it takes a bit to get used to them. And these were HARD lenses. Miniscule pieces of hard plastic take a bit to get used to.

Apart from frustrating bouts of contact lens wear, I just had a REALLY thick pair of glasses. My prescription is +13.50 right and +11.50 left. Strangely, my left eye is less blurry but worse in terms of overall vision (20/200 vs. my right eye's 20/80 optimally corrected). They've essentially been the same prescription my whole life, which is remarkable, from what I understand. I still have the same pair now that I've had for 20 years. I just keep going back in and having them adjusted. They  are uber coke bottle glasses, and always have been.

I recently got a snazzy new pair that has Carl Zeiss lenses. They are much lighter and a fraction of the weight. Interestingly, before surgery I really hated them. They are progressive lenses, and I struggled to adjust the slightly different way of focusing to read, and the image always seemed to have weird streakly Doppler effects and other blurriness that made it a struggle to use them. However, since surgery I swear by them. I switched to them immediately and was so thankful I had them. They distort the view much less than the ol' coke bottles, so that's certainly one reason. I think I can focus with them better now than I could before.

Anyway, I stuck mostly with the coke bottle glasses and occasionally an attempt at contact lenses. I remember having them when I was five and unable to adjust to the discomfort. I remember lying on the floor and my mother looming over me trying to get them in. Ugh. Sorry, mom and dad. I tried contacts again in junior high, and that didn't work, and then finally in high school, and took to them. Of course it was high school, so I was psyched too ditch the coke bottles, and I was older and a bit more mature so sucked it up and dealt with the discomfort. I've worn them ever since, though I always still used the coke bottles to read.

I couldn't live without my contact lenses now. I adore them. Especially the new pair I have - soft lenses, disposable after a month. Having previously used expensive hard plastic gas-permeable lenses that I kept a year or more, this is MIRACULOUS. Plus my vision is better, and the soft lenses irritate my nysatgmus much less. Thanks, Parelli Optical!

These lenses are good enough that I can use $25 readers from CVS to read, which is better than carrying the cokebottles around and popping out my lenses to read.

Frankly, I don't understand why ANYBODY would wear glasses when they could wear contact lenses. The experience with lenses is INFINITELY better than glasses, and seriously, the "sticking something in your eye" oogieness subsides within DAYS. And then you have super clear full-peripheral without a heavy plastic thing on your face. Do it if you can, you guys!

Anyway, as I grew up, doctors didn't push too hard to get contact lenses in, or to do much of any treatment really. Most every medical professional had pretty much the same attitude about me my whole life, up until my very recent change. I was apparently lucky to have the sight that I did have. The surgeon who did my original cataract surgery had done a beautiful job, but it was still a miracle that my vision is as stable as it is. As I got older and more interested in improving my sight, I always asked what new procedures were available, and doctors only said that there was nothing that could help me, most of the trouble was in my neural development, I was lucky to have any sight at all, and that it was questionable whether it would stay stable. I was told that I was susceptible to glaucoma.  The only treatment that was ever suggested was lens implants, which are essentially permanent contact lenses. My doctors always discouraged me from pursuing it, and admonished that the benefit was far outweighed by the risk. (I'm actually going to see a new specialist in this area next week.) I even went to Mass Eye & Ear in 1997 for a second opinion after years of getting annoyingly negative news from my regular doctor at Lexington Eye Associates. MEEI essentially told me the same thing, that I was fine at Lexington Eye, that there was nothing they could do for me. The next time I went to Lexington Eye my doctor got bent out of shape that I had been to MEEI. I got really discouraged at Lexington Eye a few years later when, in response to me complaining that using my left lens made seeing more distracting, they just said "yeah I can see how that would be". My doctor used to, when he passed a colleague in the hall with me,  say "hey, check this out!", wave us into an examining room, sit me on the chair and let the other doctor examine me. Not for an official task or a second opinion, but to check me out as an oddball case. I really didn't like their whole vibe - sour and pessimistic. But that's just me. Lots of other people go there and I'm sure are happy. They do give good treatment.

Note that nobody - not MEEI, and certainly not Lexington Eye - suggested strabismus surgery. I hadn't even heard of it until this past year, though they've been apparently doing them for 40 years. Either they hadn't heard of it, or they thought it was too risky for me somehow. I don't know, I can't imagine.

I don't hold any grudge for them not hipping me to this surgery sooner. I'd rather focus on the fact that I'm living the positive benefits now, and there's no point in looking back. Though I do mention it here to emphasize the main point of this long screed. BE YOUR OWN ADVOCATE. Do not rely solely on the opinions of experts to be informed. There is unprecedented access to good medical information on the far side of a Google search. Look stuff up. I sure wish I had.

Then it all changed in summer 2012 when, thanks to my wonderful employer, an author named Susan Barry came to talk about her book Fixing My Gaze. I didn't usually go to these authors talks, but the caption was captivating - the story of a woman who gained stereovision at age 50. I consumed her book, and immediately sought out a new eye doctor. Based on internal recommendations also at my employer, I went to the Massachusetts Eye Research and Surgery Institute. I found these folks to be endlessly optimistic, enthusiastic, and interested in my case. The intern assistant who did my initial exam there asked me more interesting questions and performed more interesting tests than I had had in the last 20 years of eye exams. They told me that strabismus surgery was a possibility for me, and there may even be other surgeries they could do to help.  I was immediately given a referral to Boston's Children's Hospital, and that brings us back to blog #1.

I grew up believing that I was lucky to see at all, and didn't question this overwhelming opinion for my whole life. I was so set in my belief that my eyesight would be the same for my entire life that frankly, I skipped a year or two of eye exams. Thanks in large part to where I work, whose stock in trade is connecting people with information, my eyes were literally opened to a completely different view. A circumstance that essentially came by accident, despite my efforts to understand how I could improve my sight. I will never be so casual about my medical care again, and I will be much more wary to rely exclusively on the voices of the expert in front of me, and check things out for myself. More information from more sources will always help in providing a full understanding of a situation. Take it from me. But not exclusively.

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