Tag Archives: scoliosis

New Back Brace

It took 3 years, but I finally convinced my orthopedist to order me a custom back brace. I have a rare type of scoliosis, very flexible with a teenage onset and that continues to progress even as an adult. My specialist at Hopkins suggested bracing me 3 years ago to see if that had an affect on the progression, but my local docs always insisted on an off-the-shelf, one-size-fits-all corset brace. News flash: Men don’t have hips, but some women do and a brace that doesn’t flair at the hips isn’t going to fit such a woman. (You’d be surprised at how often [male] doctors tried to convince me that male and female bodies are actually the same.) Since these braces invariably slid off my hips and up my chest every day, I quit wearing them and my scoliosis kept progressing.

Anyway, my local, politically incorrect ortho wrote me a Rx last month for my very own custom, plastic back brace. Have you ever had one made? It involves wearing a skin tight, t-shirt material halter dress, which might be sexy if 1) it wasn’t totally see-through and 2) I had my pre-baby body of 5 years ago. So now that I’m feeling a smidgen awkward, two people come in and start wrapping me in strips of fiberglass, like I’m a giant 5th grade papier-mâché project. They were really nice about it though (mostly just glad I wasn’t a squirmy 5 year old or unconscious, the latter of which apparently happens from time to time since they wrap you really tightly).

This is me without my brace (curve: 40 degrees):

This is me once I’m braced.
It goes over the tank top and under my shirt.

Added benefit of the brace? “You won’t be able to eat those extra French-fries without loosening it up,” my doctor told me. He’s a winner, that one.

Now, I have a habit of naming things, and I think this brace needs a name. It also needs to be a masculine name because, as my friend Danielle put it, “He’ll be squeezing you tight and with you more than a stalker! He’s always got your back, and, just like a man, he is helping you feel good in the long run, but sometimes gets in the way and doesn’t look flattering with your sexy, slinky dress.

Wonderful readers, I need your help choosing a name! So far all I can think of is Hugh (yum!) or The Situation (tell me you get the joke!). Please leave your suggestion for a name (or vote for one of those two) in the comments and I’ll choose a name in the next few days. I don’t really have any fancy prizes to offer, but if I choose your suggestion, I’ll link up to your blog if you’ve got one!

Below you’ll find some pictures of said super-sexy brace. He felt the need to show you just how awesome having a brace can be.



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An Open Letter to Medical Professionals

An Open Letter to Medical Professionals:

The physician/patient relationship is a complicated one. I realize this. And in the United States, there aren’t a lot of rules for decorum. So, because I like you (or at least some of you), I’m going to give you a few pointers today of things you probably shouldn’t say to patients.

For starters, you should never tell a patient of the opposite sex that s/he has a nice figure. That’s just icky. Then we start wondering how you’re imagining said figure. Along those lines, you shouldn’t be so bold as to say something like “WOW! You look so, SO much better when you’re straight!” to a person with scoliosis. I promise: the patient will begin to doubt your years of education. I’m pretty sure that most young children could identify the better-looking option. If that’s all your 8+ years at fancy schools taught you, we’re in trouble.

Never utter the phrase “Oh, I know just how you feel.” The one exception to this? If you are the patient’s long-lost identical twin, because we’ve all heard those Discovery Channel shows about the separated-at-birth-twins who led basically identical lives. In fact, if you are my long-lost twin, I’m liable to forgive your misguided attempt at empathy anyway.

And while there’s something to be said for a medical professional who gets excited by her job, as a patient it’s a little disconcerting to hear, “Yah, all of us were just in the back looking at your x-rays. We’ve never seen anything like it!” Sorry, it just doesn’t inspire confidence.

That said, patients usually don’t mind if you’re honest and tell us when you don’t know the answer. We’d rather you be up front then pretend to be an All Knowing Medical God, ‘cause we can totally see through that routine, even though we didn’t go to 8+ years of school for that.

Moral of the story? Use some common sense. And if you’re short on that, just give me a ring and I’ll tell you what to say. My rates are reasonable, I promise!

Maya, the Marfan Mom


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