Bras and scoliosis

Now there are two words I never thought to put together. Until now.

Thinking back on my Milwaukee Brace years, I wished then that I could forgo a bra. The brace pads pushed the elastic components of the bra further into my skin over my ribs, leaving deep, reddish-pink grooves. However, thanks to my mother's genes, I've always been one of those girls who really needs the support of a bra, so it was just one more discomfort to endure during that time in my life.

Recently, Michaela contacted me about a business idea she is exploring that will somehow involve scoliosis and bras. Intrigued? You can help her out by participating in this brief survey.

Puberty in a shell

It was summer in New Jersey and a friend had invited me to her house to go swimming in her family's pool. I told her I would walk there (less than a mile away from my house) and she expressed concern.

"What if you fall? You'll be a like a turtle on its back. 'Help me! Help me!'" she mimicked the infamous line from "The Fly".

I laughed and assured her I'd be fine. And I was.

Another summer, during a family trip to the Florida Keys, I spent some of my "brace-less" time in the sun ~ and fell asleep. The resulting case of sun poisoning made wearing my Milwaukee brace unbearable, so I went without for awhile. I remember feeling vulnerable, sleeping without the brace's support. Or maybe I was feeling guilty, not wearing it as prescribed.

This story reminded me of those instances. It is Hannah's story, seen through her aunt's camera lens. This touching tribute, by photographer Julia Cybularz, chronicles Hannah's scoliosis treatment. The story title is the first reference to "living in a shell" that I can recall ~ a very accurate description. Scroll through the photos of "Breaking the Girl" to see Hannah's journey of strength and courage.

This July will mark 36 years since my last body cast was removed, finally freeing me from my shell.

No height gain for me

When, after two and one-half years of treatment with the Milwaukee Brace, Dr. Keim decided that I needed scoliosis surgery, I wondered if I would be taller. Seemed logical to me: curved spine made straight should add a few inches, right?

That was the subject of a recent study at Boston Children's Hospital, published in the National Library Medicine. The conclusion was that, yes, among the 116 patients (average age: 14.8 years), additional height was gained after scoliosis surgery, and some patients continued to grow post-operatively.

In may case, though, I did not gain any additional inches on my pre-surgery 5' 3" frame. But then my surgery was likely more extensive than those patients participating in the study. I was also older (16) and had probably achieved my adult height by that point.

But thanks to the study's authors for confirming my hypothesis lo, those many years ago.

Maximized manipulation

I wore a Milwaukee brace for two and one-half years (age 14 to 16) before the decision was made to undergo a second spinal fusion that would correct my scoliosis. If you're at all familiar with pictures of the brace, you know it's hardly inconspicuous. The neck ring, in particular, is clearly visible. And that made it easy for P and me to meet.

It happened during the rush between classes at West Orange High School. Our eyes met and we froze as other students jostled past us. Speechless, we finally continued on our respective paths, fresh with the knowledge that neither of us was alone. Eventually we became friends and learned that our scoliosis treatment was being managed by the same surgeon, Dr. Keim.

Several months later, our common bond was dashed when I saw P at school, brace-less. Her parents were taking her to a chiropractor. "I go twice a week and it doesn't hurt," she told me. I was so jealous! And I pleaded for my parents to take me to a chiropractor, but after doing a little research, my mother nixed the idea.

Over the years, my infatuation with the thought of chiropractic treatment has done a 180. In fact, I have often said that a chiropractor for me would be like taking a Rolls Royce to a Hyundai mechanic. Having said that, I know there are some excellent chiropractors out there providing essential care to their patients. In fact, several of my family members (including my husband, Mark--and, in an ironic twist, my mother) and friends have turned to chiropractors for various ailments and gained positive results. For example, P (whose S-curve was at 6 and 12 degrees) received treatment for three years to prevent her scoliosis from progressing and, as of this writing, is doing very well with no regrets.

But there are also practitioners that claim chiropractic care can cure everything. And that brings me to the point of this post.

Recently, I found myself at an "information session" for a chiropractor in the Maximized Living franchise. One of their doctors had been at a healthful living event at EarthFare, offering free nerve scans, and Mark signed up. After a follow-up appointment and X-rays, he was asked to bring me along to his next visit to ensure I was "on board" with his treatment plan. Mark and I had no idea what to expect, but we hoped to be on our way within an hour so we could go out for coffee afterward.

First, we (there were six of us altogether) heard from the CA (chiropractic assistant)--a patient at the practice--who told us how awesome she felt after receiving treatment. Then the junior chiropractor took over the podium. He began by asking us to list the top four causes of death in the United States. Now, as a freelance writer, I have interviewed numerous cardiovascular surgeons and researchers, and they have all told me the same thing: the number one cause of death in America is cardiovascular disease. But according to the JC, heart disease was number two, followed by cancer (#3) and diabetes (#4). The number one cause of death was a word I'd never heard of (starts with an "I"), a disorder that afflicts those who are taking multiple prescriptions for various chronic disorders. Cue skepticism.

Finally, the chiropractor--Dr. B.--taught us how to read X-rays, using "before" and "after" views of previous patients. He emphasized that the key to a long and healthy life is proper spinal alignment. Then he went on to illustrate how any malady can be cured--or prevented--with spinal manipulation. Even cancer. And at that point, Mark caught my eye and mouthed "I'm sorry."

But the coup de gra for me was the last patient, a teenage girl whose X-rays illustrated the progression of her scoliosis. After explaining that the girl's parents had been advised by their pediatrician to monitor her curve at home and not pursue chiropractic care, Dr. B. dramatically revealed the most recent X-ray showing a noticeable curve to her spine. It achieved the desired effect as the other participants gasped. Meanwhile, I was thinking to myself, I've seen worse. Pressing his advantage, Dr. B. went on to describe--in graphic detail--that the girl had since undergone scoliosis surgery with cages and bolts and all manner of horrible apparatus that were now a part of her body.

O.M.G.

We were dismissed to a private room for the final phase of the evening: Mark's individualized treatment plan--and payment options. I will spare you the financial details (Dr. B. doesn't take insurance). Suffice to say that, after three hours of mangled medical facts (did you know that people with scoliosis have a markedly shorter-than-average life span??), Mark and I were punchy and snarky when the CA came in to discuss financial arrangements. After we got home (it was too late for coffee), I googled "maximized living+reviews" and found several cautionary tales, including this one.

So, the next time you're out and about, if you see someone offering free nerve scans, remember: "forewarned is forearmed."

Making the Milwaukee brace

It’s tough being a medical dinosaur.

I will always remember the after-dinner conversation when my brother revealed that scoliosis surgical patients were no longer casted post-op. Less than 10 years had passed since my own surgery in 1978 (I’d worn a body cast for eight months afterward), and I can still recall the feeling of betrayal and envy in response to this news. If only…

Yet, while some things change, others remain remarkably the same.

Recently, I found this video chronicling how the Milwaukee brace is made today. The process bears a striking similarity to how my brace was created more than 35 years ago. One glaring omission “then” was any effort to make the brace visually appealing. Other than that, the process is relatively unchanged.

Search: "Milwaukee Brace"

Although Maria Talks Back is more than two years old, I only recently discovered the “Stats” tab in Blogger that tells me, among other things, what keyword searches lead people to this site.

Interestingly, the keyword phrase most likely to land folks here is “Milwaukee brace.” Similarly, my one and only post on this topic (written on March 17, 2009) has received more than quadruple the page views of any other post!

Clearly, I need to share more about my two and one-half years in the Milwaukee brace. But, in the meantime, perhaps you’ll find pictures of me in the Milwaukee brace of interest (“Milwaukee brace pictures” is the third highest keyword search that directs folks to Maria Talks Back).

You can view these pictures on Maria Talks Back’s Facebook page. And while you’re there, please consider “liking” the fan page. It’s the best way to get notification when a new post goes up. Thanks!

Good luck, Katherine!

During the two and one-half years I wore a Milwaukee brace (between 1976 and 1979), the medical focus was on the physical. No one ever inquired about my emotional state, and how it “felt” to be in such a visibly restrictive apparatus, 23 hours per day.

Thankfully, things have changed. One of the agents of that change is Katherine Southard (a.k.a. Miss North Carolina).

Recently, Katherine discussed scoliosis, self-esteem and tolerance with students at South Harnett Elementary School in Bunnlevel, N.C. Katherine appeared at the behest of 10-year-old Emily Schrump. As you may have read in previous posts, both Katherine and Emily (like me) are scoliosis patients.

During her speech, Katherine (whose platform this year was “Scoliosis: Ahead of the Curve”) engaged the students by explaining scoliosis and showing them Emily’s Boston brace. Her core message: it doesn’t matter how people look on the outside; it’s what’s inside that counts.

I was able to generate some great (if I do say!) media coverage of Katherine’s appearance at Emily’s school. The stories ran this week in the News & Observer and the Fayetteville Observer-Times.

If her commitment to Emily is any indication, Katherine has made a tremendous impact during her reign as Miss North Carolina. In August, she secured a $500 shopping spree at Peebles clothing store, to help Emily buy back-to-school clothes that would fit over her new brace. Katherine also connected me with the Schrump family, and what a rewarding experience that has been! Together with Emily’s mom, Suzette, we’ve taken on a health insurance giant and scored some cool media opps along the way.

This weekend, Katherine will be competing in the Miss America pageant . Please join me in wishing her the best of luck!

The redheaded stepchild of orthopedics

Make no mistake. Scoliosis is serious stuff. Just ask me – or anyone else who has it.

So, why is it so difficult for scoliosis to be taken seriously?

I’m not talking about people who are afflicted with scoliosis – or know someone who is. I’m referring to the media and the general public, and maybe even some in the medical community.

In my “Milwaukee Brace” post, I cite the scene in Sixteen Candles where a girl wearing the brace attempts to quench her thirst at a water fountain. But, that’s just one example of many I’ve seen and heard where the punch line involves “the kid with scoliosis.”

And while it may be good for a laugh, scoliosis isn’t “sexy” from a publicity standpoint.

Several years ago, I offered my services as a PR professional to the National Scoliosis Foundation pro bono to help them publicize the importance of early screening for effective treatment of scoliosis. Since many school systems nationwide have determined that in-school screenings are cost-prohibitive, the story was a public service encouraging parents to request scoliosis screening at the pediatrician’s office. The most prominent placement of the press release came from a local, weekly newspaper whose editor had an adolescent relative with scoliosis.

Even within the medical community, scoliosis is treated like the redheaded stepchild of orthopedics. So, as a condition, it doesn’t get much attention, and that inattention can extend to its patients.

Last summer I wanted to establish myself as a patient with a local orthopedist that Mary had recommended, but when the doctors learned I was an adult scoliosis patient – in pain – my file was shuffled from one to the other until the pain specialist in the practice finally delivered the news: they couldn’t (or wouldn’t) see me!

I’ve since learned that this is very common for adult scoliosis patients. Why? I have no idea, but I figure any doctor who practices in that manner is definitely one to avoid.

The Disney parallel

I’ve just returned from a Disney trip/cruise. My parents took my family and my brother’s along with them to celebrate their 50th wedding anniversary. It was great! We couldn’t have asked for nicer weather and everyone had a wonderful time.

Being in the Magic Kingdom stirred memories of the 1970s when my parents first took my brother, Anthony, and me there.

My memoir takes place during the ‘70s. And, when I mapped out the dates of my childhood Disney visits, there’s a coincidental parallel.

The first trip was in July 1973. It was a halcyon time for Disney, as well as for me. I was 11 and Anthony was nine, and the Magic Kingdom had only been open a couple of years when my family drove down to Florida from New Jersey in the new Chevy Impala.

In 1974, we took the Auto Train -- in August! Space Mountain was under construction, and Epcot had yet to become a Disney imagineer’s aha! moment. There was no such thing as a park hopper pass, because there was just one park, and your vacation package included a limited number of tickets entitling you to visit rides that were categorized “A” (i.e., Cinderella’s Carousel) through “E” (i.e., It’s a Small World and Pirates of the Caribbean).

Then, in 1975, Disney’s first thrill ride -- Space Mountain -- opened, and I received my spondylolisthesis diagnosis. Things would never be the same.

We returned to Disney in April 1977. The golfball icon of Epcot was under construction, and I was wearing the Milwaukee Brace, unaware I’d be having a second spinal fusion the following year. More than anything, I wanted to ride Space Mountain. Dr. Keim had said I could, but my mother had other plans, as detailed in this excerpt from my memoir:


“Maria… If there’s a sign at Space Mountain that says people with back problems shouldn’t ride, you’re not going on it.” I flushed with angry disappointment. Dr. Keim said I could go on Space Mountain. Mom knew that, but she also knew I wouldn’t argue the point in front of everyone. Well played. Mom thought she was doing what was best for me, so arguing was pointless. Which is why my first Space Mountain ride was years later with my own daughter.


During this latest trip to Disney World it was hard not to be nostalgic about how much things have changed. Now, my children and Anthony’s have the same level of excitement for Space Mountain, Test Track and Tower of Terror that we had for the Haunted Mansion and Pirates of the Caribbean. But, this time, I rode them all.

The Milwaukee Brace

I love the movie, Sixteen Candles. It’s a terrific “coming of age” story. The exception, for me, was Joan Cusack (a.k.a. Geek Girl #1) trying to get a drink at the water fountain while wearing a Milwaukee Brace.

The first time I saw it, I was startled by the fact that scoliosis – or at least a treatment for it – had “made it” into pop culture. But, the stereotypical overtones bothered me. They still do.

But I digress!

My spondylolisthesis had been so severe that my scoliosis was barely a blip on the orthopedic radar screen. Dr. Keim said if my curve didn’t worsen after my first body cast was removed, I’d be in the clear. My spine, however, had alternate plans and, seven months later, I was off to meet my brace man, Mr. Zamosky, who would custom-fit me for a Milwaukee Brace – an exceedingly awkward contraption created in 1946 by Walter P. Blount and Albert Schmidt as an effective alternative to surgery in treating scoliosis.

It was the “alternative to surgery” part that motivated me and my parents to give it try.

These days, doctors are more likely to prescribe a Boston Brace or Charleston Brace for scoliosis, depending on the nature of the curve. Both braces are lighter, less visible and more comfortable for the patient. You can see photos and read about all three at this link: http://www.iscoliosis.com/articles-brace_types.html.

Back in 1976, though, the Milwaukee Brace was the headliner in scoliosis treatment, particularly for “S” curves like mine -- which looked similar to the X-ray at this link: http://en.wikipedia.org/wiki/Scoliosis.

So, into the Milwaukee Brace I went, for 23 hours every day. It was a gamble, whether the brace would cure my scoliosis. No one – not even Dr. Keim – could know for sure if it would pay off.

Then, 2 ½ years later, I had my answer, and my second surgery was scheduled.

Something about Mary

Every individual is a product of his or her unique life experiences, and my spinal history has played a starring role in how I have become the person I am today. However, I don’t want that part of my life to define me because I’m much more than a spondylolisthesis/scoliosis patient.

I feel a special connection to friends and family who were “there” when I was living through my surgeries, etc. And, as I have made new friends during my lifetime, I have eventually, for one reason or another, shared at least the Reader’s Digest version of my story with them.

That’s how I met Mary.

In 2002, I met Marguerite, a woman in my neighborhood who was a fellow stay-home mom. As we became acquainted, the story of my back came out. She told me about her friend, Mary, who was also from New Jersey and had had scoliosis surgery. Marguerite offered to put Mary and me in touch and, days later, Mary called. We talked for over an hour, comparing medical notes, and soon discovered we’d had surgery in the same hospital – Columbia Presbyterian in New York City – with the same surgeon, Dr. Hugo Keim. Like me, Mary had worn the Milwaukee Brace before her scoliosis surgery and now her daughter, Emily, was in a Boston Brace, hoping to avoid surgery.

We started calling ourselves "twisted sisters." I told Mary about my memoir and she asked to read it. And I was so excited to have someone outside of my family give me feedback about it.

Mary told me about flat-back syndrome. She had it and wondered if I did, too. Unbeknownst to me, I did.

I’ve read many horror stories about aging scoliosis patients. I’m a worrier by nature so tales of agonizing, nonstop pain, and Harrington rods and other hardware breaking through the skin were not giving me a warm-and-fuzzy feeling about my medical future. But, my friendship with Mary has helped me see that every scoliosis patient is different, with their own unique issues. In return, I think I’ve shown her how exercise can help ward off or even prevent potential future problems. So, it's a mutually beneficial situation, and a very special friendship.