Musings of a Marfan Mom

New Back Brace

| 17 Comments

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.



Be Sociable, Share!

Related Post

17 Comments

  1. maya-i dont have a name for you but those pictures of your brace are HILARIOUS!!!! u are a crack up! :)

    [Reply]

  2. Those pictures are a hoot! I was trying to think of a name but I couldn’t come up with something funny and cute!

    [Reply]

  3. I vote for Hugh, because it reminds me of a sexy British man.

    [Reply]

  4. PLEASE name it “the situation” – please! That is TOO hilarious!! I’ll do a little fist pump for you :)

    [Reply]

  5. That’s hilarious! I thought our little monkey Curious George did some crazy things, but seeing a back brace on a slide and sliding down a pole takes the cake! lol I’ll have to think about my nomination for his name and come back later to comment on that. I’ve got a lot to think about!

    [Reply]

  6. How ’bout Beckham or David Beckham? You know, Bend It Like Beckham? You could say that he’s bending or bracing your back into an upright position. I may come up with something else. We’ll see.

    [Reply]

  7. The Brace-inator. (FYI: You have to say it with an Arnold Schwarzenegger accent.)

    [Reply]

  8. Hey girl! Sorry I’ve been a bad blog follower lately. I loved hubby’s take on Marfan, and can’t believe you have a one-year-old. Time flies!

    Anyway, yes! I HAVE had a custom brace made! I have a 27-degree s-curve. I had a brace that twisted me the opposite direction that I wore at night through junior high and high school. Good times. Now I just have chronic back pain. More good times.

    Anyway, my brace was Blues. He was blue. So creative, I know. But, he was my buddy. I actually liked the brace-making process. Like a free spa treatment! :)

    [Reply]

  9. Only suggestion I could come up with is Bruce. Bruce Brace? Has a nice ring to it :)
    I’m dying to know how many funny looks you got while taking those pictures! I bet it was priceless!

    [Reply]

  10. I prefer Jack as in Jack Sparrow (or Johnny for that matter).
    The pictures are great, especially the ones with Menininho.

    [Reply]

  11. Maya, you are too much! I have been following your blog since you added it to Facebook! I love reading what you have to say! I think this may be my favorite post ever though! You have such a wonderful positive spin to things! I vote for “The Situation” I laughed out loud when I read that! Hope all is well in California! :)

    [Reply]

  12. I second your mom – I like Jack Sparrow. Yum.

    This post absolutely made my day – I would’ve loved to see what the passers-by thought of your photo shoot! :)

    [Reply]

  13. How about Mr. Squeezy?

    Happy SITS Saturday!

    [Reply]

  14. You are one odd puppy. I laughed at the pictures. I can’t come up with a name as my mind is racing thinking of the fun you had and wondering about observers.

    You are a blessing to us all.

    [Reply]

  15. i am 13 and i have a back brace identical to that wish i could be as excited as you are

    [Reply]

    marfmom Reply:

    it takes awhile to get used to it, i know. have you had yours for awhile? do you have marfan? i run the teen program for the national marfan foundation and i’d be happy to put you in touch with some other teenage girls who are wearing or have worn a back brace if you want. just leave a comment here or send me an email at marfmom @ gmail.com and i’ll have them email you.

    [Reply]

Leave a Reply

Required fields are marked *.