Kathy’s Spinal Column

Sorry it took me a while to add more. I didn’t mean to leave all of you hanging but sitting is problematic. At any rate…

So I was 13 years old and it was decided we would try to see if a back brace would work instead of surgery. The first thing they did was make a plaster cast of my hips. Sounds simple, right? Nope.

I remember I had to stand inside this “cage” thing (for lack of a better word).  Some sort of metal structure where I hung onto the sides and tried to stand as straight as possible while thrusting my pelvis forward. (Not easy when your spine has a 39 degree curve in it).  So I had to stand there until it dried then they cut it off me and from that they made a plastic mold with some sort of cushioning on the inside.  It covered me from just above the pubic bone in the front, curved up along my stomach to the middle of the sternum then closed over my buttocks in the back. Huh, not too bad you think, right? Well what I left out were the two metal bars in back and the one in front that came up to connect to a “halo” around my neck with a chin rest in front.

I was shocked to say the least. I seem to recall thinking “I can’t wear that” and my father literally cried when he saw what his little girl would have to wear. And wear it I did . For 23 hours a day. I had to wear it when I slept (the only comfortable position was on my side) and the only time I took it off was when I bathed.  It was pretty uncomfortable at first but I got used to it. Unfortunately, there were some side effects that I never got used to.

Think about the corsets women wore a hundred years ago and multiply it by 10. Not only was breathing difficult but it rubbed against my skin.  I got used to the feel of it and learned to breathe better but despite the tank top I wore underneath, I developed an affliction called “contact dermatitis”.  Quite simply with the heat from my skin and the brace rubbing against it I developed a very itchy rash which often got so bad it would “weep”.  I won’t go into detail here but I had this on both hips and it took about two years and a myriad of solutions to finally get rid of it. Yes, I went to the dermatologist but when you can’t rid yourself of the source of the problem it’s hard to find an effective solution.

So, there I was, 13 years old, socially akward, in a new school and wearing a brace to boot. Lovely.  I had to get some new clothes to fit over it and I soon learned that polyester was not my friend. (This was the mid 70’s you understand. Disco was King). More often then not, my clothes got what we called “brace marks” on them from the fabric rubbing over the metal bars of the brace. This was particularly problematic when said clothes belonged to my sister.

I remember one of the first directives the doctor issued that my parents took to heart was about keeping the back muscles strong . When you wear a cast or a brace of any kind you aren’t using your muscles and you tend to lose muscle tone which is not good when you are trying to straighten the spine. The only solution to that was to swim. Alot. Fortunately, I love to swim (it’s about the only physical activity I was and still am any good at). I was enrolled in AAU swimming that winter, practiced like I was on a team but didn’t go to any swim-meets. I don’t even remember if there were any.  Practice was 5 days a week and I enjoyed it not just because I love to swim, but it got me out of the brace for a few extra hours a day.

Back to the issue of school. It’s kind of hard to  do P.E. when you don’t have any flexibility but participate I did. Though I don’t quite remember how. I must say though that when I was fitted for the brace in September and it was still very hot in Pennsylvania at that time of the year.  I got overheated the first day and had to go home early but after that my mom let it be known that I would simply have to get used to it. And so I did. But it always seemed that just when I thought the brace was getting bearable I’d go to the Doctor’s office and find that I had grown so they had to adjust the height of  the Halo chin rest and once again it felt like something was pushing my head back onto my neck.

Since I can’t currently find any pictures of myself at 13 or my brace I managed to get a few from the internet.  Have a look and have a drink. It’s a bit to process. That’s all for tonight.

Not too bad

Oh what a lovely contraption(no, this was not me)

A modern day corset of sorts

When I was roughly 10 years old a routine check-up at the Pediatrician’s office revealed an abnormality in my posture.  My parents took me to an Orthopedic Surgeon who took x-rays and confirmed the diagnosis: Scoliosis, or in simpler terms, Curvature of the Spine.

Scoliosis (skoe-lee-oo-sis) is defined as  a condition that causes the spine to curve to the left or right side. Sometimes the curve resembles the letter S or C. Scoliosis can develop during childhood or adolescence. The changes scoliosis causes can happen slowly over time or more quickly as the child goes through a growth spurt.

(Refer to http://www.spineuniverse.com/displayarticle.php/article880)

I don’t remember much of what was said at the time because I didn’t really understand what it was all about. Only that I was given some back exercises to do and was told that “we” (The Doctor??) would monitor it for the time being. My parents weren’t big on explaining things, just issuing orders. With the exception of  occasionally being told to “do your exercises”, I didn’t really give it much thought.

That all changed when I was 12 1/2 years old.  We’d gone to Europe for the year. My father was invited by the French government to do some scientific research so off we went.  It was a wonderful year full of travel and adventure. Unfortunately it was also the year I had a growth spurt. With the growth the curve increased to the point I was practically dragging my left foot on the ground when I walked. My shorts didn’t fit properly and if I didn’t already know something was wrong, it was clearly visible in the pictures we took.

It was June before we returned to the United States and September before I could see the Orthopedic Surgeon.  When we did get to see him, the news wasn’t good. The curve had progressed to the point where the Doctor thought that surgery was probably the only viable option.  This was NOT something my parents wanted to hear. Even though they trusted and respected the surgeon, this was the seventies. Back surgery wasn’t what it is today and carried serious risks . Especially one as extensive and intrusive as the one for Scoliosis.

The method that was used then for correcting and stabilizing the spine was  something called the Harrington Rod *( http://www.jdryerscoliosis.com/Harrington_Rod/harrington_rod.html )

The risks were great and my parents were frightened at the thought that something could go wrong and their 13 year old daughter could end up paralyzed for life.

There was still a second option available though the doctor wasn’t sure if it would work, considering how far my curve had progressed. That was the Milwaukee Brace http://www.nbak.tierranet.com/milw.htm

But that as Kipling would say, is another story.  I’ll leave you to stew over the information I’ve shared thus far and will continue on with my story tomorrow. Questions? I’d love to hear them and will try my best but some of the answers may have to wait for further posts.

If  someone had asked me a year and a half ago “What is the most important thing people need to know about you”?  I would have had a hard time answering that question.  I would have said something to the effect that “there’s a lot more then just meets the eye” or “I have two very different sides to me” or something along those lines.

These days the answer is very simple. I would tell them “I have  Scoliosis “.  Of course if you know anything about it you would realize the answer isn’t simple at all. There is a lifetime worth of stories behind it and what happened a year ago affects just about every aspect of my life.

To understand what I’m talking about, we’d have to go back to the very beginning to when I was 10 years old.