Day 6: Adapting

A new week at back camp means a whole new set of patients. There are four of us returning from last week and four new kids this week, two high school girls and two six year old boys. Looking at the little boys I can't help but to wonder what would be different if that had been me.

Diagnosed with a 48 degree curve at nine, I probably had moderate scoliosis when I was younger, when I was six. What if I had it treated then instead of intense bracing as a pre-teen? Maybe I could have forgone the years of physical pain and embarrassment.

I had a Boston brace for three years that went from my armpit to halfway down one thigh. My brace gave me blisters and cuts, but those went away. It also gave me uneven curves and excess skin flaps that remain to this day. I was lucky when I wore my brace, I had a uniform for school everyday that covered up my bulky body. Unless you punched my stomach, you wouldn't even know it was there.

Bracing was a part of my scoliosis journey, and although it was sometimes a pain I wouldn't take it back. Wearing it for 23 hours a day taught nine year old me commitment and perseverance. My hour out would be for playing sports or playing outside and I learned to enjoy that time to the fullest. In all honesty, after the first couple months I didn't even mind. My brace became a part of me, any subsequent pain was just natural.

Our bodies adapt to our surroundings to optimize living conditions. My body has adapted to the scoliosis and had adapted to treatments before, I know this too will come in time. But as I stand balancing on an exercise disc on a vibrating plate with fifteen pounds weighted on my hips, I can't help but wonder, what if that six year old had been me?

Weekend Fun

...well, sort of. Friday was Day 5 at the CLEAR Institute and we all get half days. Instead of going through three full circuits one and a half are done in the morning. Then they send you home with your cantilever, a Dyna Disc, and a personalized schedule for the weekend.

I had to do two more twenty minute sessions on Friday and four twenty minute sessions on Saturday and Sunday. This was my first experience of how the next 9-12 months will be: doing exercises 120 minutes a day, four times on the cantilever relatively spread apart. For this weekend it was easy. I would do a session when I woke up, then before lunch, in the afternoon, and after dinner. The whole time I would just watch the Olympics, it was really no big deal.

Despite the hour and a half mandated for these exercises, I still had time for some work, food, and fun. I did some of my summer reading, we went out for dinner and lunch, and I got time to play field hockey, soccer, and run. The exercise is a great relief after all of the heavy weights and constraints. Running out soreness and stiffness I'm able to feel like myself again.

Sports make up the majority of my life. Any given week during the school year I'll have at least 10 practices for three different teams. Sports are my social life, my team mates are my best friends. In dealing with my scoliosis it has always been essential to me not to compromise that. This year, however, that might have to change.

Four twenty minute sessions were doable on a summer weekend with no real responsibilities, but during the school year it will be much more difficult to make the time. I am going to have to make sacrifices, sleep being the first of them. I plan on waking up at 5 AM to do a session before school, I'll squeeze in another before practice, one after practice, and probably one at midnight after the massive junior year work load.

No doubt, it will be difficult, and there will be many times I'll wish I didn't have to, but this is my challenge and I know that I can do it. I'll be healthier, fitter, and a bigger person because of it. Scoliosis is my challenge, but this is my life.

Day 4: Meet Megan

There are six of us here at the CLEAR Institute, affectionately called back camp. We all have different backgrounds, different stories, different curve types, different curve severities, and different treatment plans. But we have all been given this opportunity to be here together.

There's a pair of 13 year old twin girls whose mom sits with them through the day; there's a fourteen year old boy named Nick; there's me; there's Zach, an 18 year old competitive swimmer on a scholarship; then, there's Megan.

Megan is a rising high school freshman from Wisconsin with pretty blonde hair and freckles. She too, has severe scoliosis. And like me, CLEAR was her last resort. 

The majority of parents turn to CLEAR as the last step, the desperate measure before an inevitable surgery. To some, like me, surgery is looming. To others, like Megan, surgery is imminent. In fact, Megan had surgery scheduled. For two days ago.

At the beginning of back camp her curve measured at a 52. The second day showed it down to 40 degrees. Surgery is no longer necessary, and may not even happen anymore. Instead of living the rest of her life with a titanium rod down her spine, this pretty little fourteen year old will just get to live: live however she wants with no constraints or restrictions.

This is the story for many of the families that come through here; what initially was an act of desperation becomes the final treatment solution. As long as Megan's 40 stays stable, she could live without any more treatment for the rest of her life. However, there are more Megans out there. There are patients everyday undergoing spinal fusion surgery, accepting the risk of infection or even paralysis, and completely changing their life.

Megan was the lucky one, she got to come here. Tuesday morning at the time booked for the OR she was watching The Sandlot in the traction chair, not under heavy anesthesia. Her family is working on a website to share her story, and spread the message that surgery isn't the only answer. So hopefully, in the future, there will be more little girls with stories more like our Megan's.

Day 3: The New Normal

The days are becoming long and monotonous, I now do the same exercises at the same times and weights three times a day. I've become accustomed to the pulls and constraints, and now I primarily nap through each of the stations. This has quickly become my new normal.

I struggled for a long time with the idea that my normal is different than everyone else's. By default, wouldn't that mean that I am abnormal? My body is different than all of my friends': my hips are uneven, my shoulders aren't straight, I have visible scar tissue from three years of bracing, and my back is "deformed." But all of those things are what make me, me. For half of my life this has been my normal.  And even though scoliosis may separate me from my immediate peer group, there are thousands of men, women, boys, and girls across the whole world that share my definition of normal.

In large part, that is why I'm writing this blog.  To share my thoughts, fears, and experiences to let others with scoliosis know that there are people going through the exact same thing.  There's definitely a comfort in knowing that you are not alone in whatever you go through. I have been blessed with an amazing and supportive group of family and friends; I have been blessed with the opportunities that I have been given. Now I want to share, and be a blessing to somebody else. Because in actuality, my normal may not be so very different from yours.

Day 2: Good News!

The daily intensive sessions are, as promised, intense. The Eckert Table has given me blisters, the Saunders table made me cry, the vibration station makes my skull fall asleep (pins and needles, funny feeling), and the cantilevers leave a lasting full-body soreness.  But given my good news only five circuits in, I would say it is all worth it.

Monday morning my x-rays measured a 51 degree upper curve. Tuesday at lunch it was down to 36. Nine hours of discomfort for a thirty percent correction? I'll do that any week.

Through the majority of stations we are all plugged in to iPods. I find it easy to reach my happy place with the familiar songs in my ear.  Instead of this place resembling a medieval torture chamber the Zac Brown Band can transport me to the beach or Kanye can take me to practice somewhere. For the thirty minutes in the chair movies are played to again remove you from reality.

The attendants, nurses, and doctors are all incredibly friendly and nice. After all, the entire occupation is dedicated to fixing you and your problems. Maybe I'm not quite fixed yet, but with hard work and dedication   I can be. 51/33 to 36/29 is a marked improvement and if it lasts, every minute in those contraptions will be worth it.

CLEAR Institute Day 1

Threatened with surgery, my family and I searched for different options.  We found the CLEAR Institute, an alternative method of scoliosis correction that does not use bracing or any surgical option (http://www.clear-institute.org/Home/tabid/157/Default.aspx).  Instead, the brain is trained to correct the spine and spinal muscles through chiropractics and physical therapy.  At first we were skeptical, the correlation between brain and muscle and spine is different than any previous theory.  But after speaking with over twenty people who had undergone the program we decided it was worth a shot.

CLEAR runs in an intensive circuit of six stations repeated three times a day for two weeks at the program station, then exercises prescribed for the next several months at home.  Four of the stations work to mobilize the spine while two work to correct it. Each is specialized to the patients specific needs.

First, the Eckert Table to mobilize the spine: I lay down on my stomach on a six foot, segmented table.  There are five straps: two to correct curvature at the waist and chest; three to secure the patient to the table at the chest, the hip, and the feet. The top portion of the table is then turned 45 degrees to the right (I have a backwards-s curve).  When activated the bottom portion of the table (hips down) is raised and lowered 45 degrees each direction to create mobility for the following circuit round.  This station lasts for 20 minutes, and at the end a massage is given hips to shoulder by a mechanical chiropractic adjusting tool in order to increase mobility.

Second, the Saunders table to mobilize the upper spine: I lay on my back on a chiropractic table with a small roll under my neck.  My head is placed in a harness connected to the wall and my hips to a band connected to the end of the table.  When activated, the table extends three inches, pulling the hips and lower torso away from the upper back and neck. This station lasts for only ten minutes with extreme discomfort, but increased mobility.

Third, the Vibration Station (I do not know the official name) to mobilize the neck: This station involves laying on a similar table in the same position with foam blocks beneath the legs and lower back and a vibrating roll beneath the neck. The head harness in this station is weighted down to create increased vibration intensity as the roll popped every half-second. This station also lasts for ten minutes.

Next, the Doctor Visit to create personal mobility, each is specialized to the patient: For me, the Doctor pops my tailbone twice with compression.  Then, he cracks my upper back, and finally my neck both directions.  He also uses the chiropractic adjusting tool on my neck and top three vertebrae.  All of this is to mobilize the vertebrae and joints.

Then, the physical therapy begins in the Scoliosis Traction Chair: The chair has several straps tightened to specificity by curve direction and severity.  The straps are placed at the waist and chest and resemble the bracing system. Arms are suspended at a 90 degree angle to the shoulder. This station lasts for thirty minutes.

Finally, the Cantilevers: Each cantilever is made individually for each patient.  Consisting of PVC pipe and Styrofoam rolls, they are easily customizable. Each cantilever is also weighted at 15 lbs to naturally pull the muscles and spine straight. The cantilever is fit onto the patient while they stand on a Dyna Disc on a vibrating platform.  The balancing act occurs for twenty minutes at a time.

The focus of CLEAR is to train the involuntary muscles that act subconsciously and we have no control over, so that even after the program they will have the muscle memory to remain straight. We will see how it goes, I'll keep you posted!

In The Beginning...

A precocious nine year old with long brown hair and dark brown eyes, I always had a knee scraped and loved to be outside; I played rec soccer and read Harry Potter eight times through for fun; I was a relatively normal third grader with only third grade problems.  But in that spring of 2005 I began to have regular headaches.  Slightly worried, my mom brought me to the pediatrician who decided I needed glasses and soon enough the headaches ceased.  However, at this same appointment the doctor decided to do a routine check for scoliosis.

"Bend down and touch your toes." I've been told so many times now I don't even have to be asked anymore.

But as a nine year old I complied, and when she found a curve she advised an appointment at Children's Hospital in Washington D.C. The walls in the waiting room were white, the smell was starch and filled with cleaning supplies. The place was scary and foreboding, despite the colorful pictures tacked on the walls. Nine year old me looked up at  my dad, holding my hand and asked what would happen to me.

Reassuringly he answered, "A few x-rays at worst."
Boy was he wrong.

The upper curve was 48, the lower 36.  I wore three braces from 2005-2008 over the puberty years that stopped the curve from getting worse and even made it better for a while (at one point I was at 36 upper and 24 lower), but in the years since I've been out of the brace the curves have been progressively getting worse and now I have a 54 upper and 38 lower.  I've been threatened with surgery and spinal fusion multiple times.  But as a multi-sport varsity athlete I do love my mobility, and that is what has brought me to the CLEAR Institute, looking for any option other than surgery: an option to prove that scoliosis doesn't define me and nothing else is going to tell me how to live my life.