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The Fear of Undergoing a Medical Procedure You're Not Sure Will Work

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

If you’ve read my articles for a while, you’ll know I’ve written a couple about a movement disorder I developed a couple years ago from taking psychiatric medications. The disorder, tardive dyskinesia (TD) is characterized mainly by uncontrollable and uncomfortable facial tics, though it can produce tics in the head or limbs. For the longest time, my tics were mainly just hard blinking, and occasionally I would uncontrollably grunt or clear my throat. At its worst, I would even jerk my head sometimes. All in all, for me, TD has evolved over time and changed.

At the moment, my tics are really just uncontrollable eye rolling, sometimes to the point where it’s painful, and occasionally hard blinking. I’ve been seeing a neurologist for about a year now trying to find ways to treat it, and honestly, there isn’t really. There are some treatments available, but they’re relatively new, the research is sparse and the side effects can be dangerous. However, we decided to try one treatment, a minor medical procedure that is not invasive: botox injections.

Yes, you read that right, botox injections. Commonly known for elective cosmetic surgeries, botox is a neurotoxin that essentially paralyzes muscle nerves. In cosmetic uses, it can make skin look healthier by eliminating wrinkles, among other things. What many people don’t know, however, is that botox is not only an elective procedure, but can in fact be used medically. Generally used to help treat uncontrollable movements, it isn’t usually a first-choice treatment. However, my doctor and I decided that the potential benefits outweigh the potential costs. But there’s a catch.

If my tics were still only primarily hard blinking, the injections would be much more favorable, as they would almost be guaranteed to work. Hard blinking obviously involves the muscles around the eye, and a muscle “relaxant” like botox would stop my eyes from blinking so hard. It wouldn’t deal with the neurological underpinnings of my tics, but would deal with them at the source. However, like I said, my tics right now are not primarily hard blinking, but rather severe eye rolling. These tics are trickier, as they are not controlled by muscles and nerves that can safely be injected with, well, anything really. But just hold on, I haven’t even gotten to the scary part yet.

My doctor said that the chances of success with this are somewhere in the middle to low region, with the chances of rare side effects even lower. If you’ve read practically any of my other articles, you’ll know I don’t have a great track record with rare side effects of anything. The most concerning rare side effect, the one that has made me so anxious that I’ve been shaking, is eyelid drooping. It’s exactly what it sounds like: the muscles become so paralyzed that they cannot even hold up the eyelid, and sometimes eyebrow, at their normal level. This can be mild, and hardly noticeable, or severe enough to impair vision. Here is where my issue comes in.

I am Asian American, and in fact, I already have a drooping eyelid on my right eye. Being Asian, my eyes are naturally already thinner than the eyes of most other races, and the presence of a drooping eyelid already cuts off just the top portion of my peripheral vision in my right eye. I hope you can see the pieces all starting to fall together now.

What happens when you take someone with thin eyes and a drooping eyelid and add injections that could possibly not work and make their eyes droop even more? Well, you get a recipe for terrible vision and pretty high levels of embarrassment.

I’m going to be honest with you, as I always am in these articles: I’m scared. I’m scared of this procedure going sideways somehow. I’m scared that the side effects will become reality despite their low theoretical chances. I’m scared, and I’m not really used to being scared. You would think those close to me would be trying to support me and help me, right? That is partially true. I have a support system that is somewhat inconsistency supportive, at least some of those in it. The procedure is only a couple days away from the writing of this article, and I’ve had everything from full on support for my decision to go forward with it, to people telling me flatly they don’t support me and think I should just live with the tics, and a few things in the middle. A support system like that is hardly supportive, and it makes this time before the procedure harder.

I can’t tell the future, just like everybody else. I wish I had a crystal ball and could see into the future, to see I’ll be able to open my eyes in a few weeks. I have yet to receive my crystal ball if it’s in the mail, so for now, I have a few things I can do. Just like with all anxiety, I fight it enough so that it doesn’t get in the way of me living my life. If I sat along in my apartment and let the fear stew and boil, I would be frozen emotionally, afraid to do anything, including the procedure. I can speak with my doctor before, to get more of the reassurance she has already provided me. I’m lucky enough to have a very talented, knowledgeable and also kind neurologist who recognizes that this is a difficult position for me to be in. But most of all, I’m going to trust my gut, my doctors and those whose opinion truly matters to me. Those who support me in this are the more important people in my life, and those who blatantly objected, well, I can’t please everyone can I? (Though you might expect a little more grace from people when you are discussing medical choices that only relate to you.)

My procedure is in just a couple days, and there’s no changing it. I will live with the benefits and consequences of it, whatever they may be. I have trust in my neurologist, and myself, that we are doing the right thing. I trust I will still be able to open my eyes after this, but you know what? Even if I can’t, the Earth will continue to spin, the clocks will continue to tick away, and my life will be just as meaningful as it was when my eyelids were open. And no amount of botox or negative people around me can change that.

Getty image via chachamal

Originally published: October 15, 2020
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