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“I would
wear it for you if I could,” my sympathetic father said, in
an attempt to console me. It didn’t work. I continued to cry
in the back seat of my mother’s Oldsmobile, in disbelief, in
hopes that my condition would vanish once we reached home.
But when Dad pulled into the driveway, I was still sitting next
to the x-rays of my crooked spine, still crying, still scared, still
dreading having to wear that ugly, uncomfortable, plastic brace.
Dr. Stanley Hoppenfeld, director of Scoliosis Associates in The
Bronx, NY, at the time, diagnosed me with scoliosis, the lateral
curvature of the spine. According to The Johns Hopkins Department
of Orthopedic Surgery, about two percent of Americans are affected
by scoliosis. In my case, I had the most common form of the disorder,
adolescent idiopathic scoliosis, in which the cause of the abnormal
spinal curvature is unknown.
“Don’t
worry, you will look back on this when it is all over and laugh
about how upset you were,” my father tried to comfort me again.
“Eight
years after my diagnosis I still have not laughed about my
experience with scoliosis, but as hard as it was, and as weird
as it sounds, I am now thankful for it." |
Eight years
after my diagnosis I still have not laughed about my experience
with scoliosis, but as hard as it was, and as weird as it sounds,
I am now thankful for it. It has made me strong and compassionate,
and has taught me to appreciate what I have and not to sweat the
small things in life.
Alisa Giardinelli,
native Philadelphian and writer for Swarthmore College’s news
and information office, wore a back brace during the night for seven
years and underwent spinal fusion surgery at the age of 14, which
was followed by six months straight of bracing. She too believes
that her scoliosis has served to teach her an important lesson.
“In
the hospital, I was around kids a lot worse off than I was. As uncomfortable
as I was, I knew I would live.”
Instead of
feeling sorry for herself, Giardinelli put her condition in perspective.
“I always knew my issues were manageable. I think knowing
that has served me well as an adult.”
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"Bracing
is used as treatment for scoliosis patients who suffer from
curves in the range of 20-40 degrees." |
In my case,
Dr. Hoppenfeld suggested an aggressive approach of 23-hour per day
bracing until I reached skeletal maturity, in order to stabilize
my spine and prevent the curve from increasing. In his words, the
brace was to be “very aesthetic.” It was the furthest
thing from “aesthetic” that my 12-year-old eyes had
ever seen.
Bracing is
used as treatment for scoliosis patients who suffer from curves
in the range of 20-40 degrees. According to The Mayo Clinic, “Bracing
is an option only during the years of active growth,” and
ends upon full skeletal maturity. Its purpose is to prevent curves
from increasing into surgical range. This approach does not necessarily
improve the curve but stabilizes it.
My first brace
was specially made of hard plastic to form to my body. It strapped
closed in the back and was to be worn under my clothes. During the
summer, it trapped in heat. It was uncomfortable, painful, and atbest,
annoying, but it was definitely not “aesthetic.”
I went through
two braces in three years, until my growth plates closed toward
the end of my freshman year in high school. At this point, Dr. Hoppenfeld
felt that he could no longer help me with mere bracing. He suggested
posterior spinal fusion surgery to my parents.
“'Any
kind of major surgery makes a kid grow up faster than their
peers and gives them a sense of the big picture,' Giardinelli
believes." |
Surgery is
recommended for patients with curves greater than 40 degrees.
Posterior spinal
fusion corrects the curve by permanently implanting metal rods in
place to hold the bone fusion in order for it to correctly heal.
“Scoliosis surgery is one of the longest and most complicated
orthopedic surgical procedures performed on children,” according
to The Mayo Clinic.
| "Posterior
spinal fusion corrects the curve by permanently implanting
metal rods in place to hold the bone fusion in order for it
to correctly heal. " |
In December
of 1985 Alisa Giardinelli underwent spinal fusion surgery at A.I.
Dupont Institute in Wilmington, Delaware. She
woke up nearly two inches taller than she was prior to the operation.
“Any
kind of major surgery makes a kid grow up faster than their peers
and gives them a sense of the big picture,” Giardinelli believes.
At 14, she
was fortunate to realize the importance of life, a notion that many
of her classmates had probablynot yet pondered. “In the midst
of it all, especially the surgery, my sights were set on the future,
not the moment.”
Catherine Gianaro, an
information officer at The University of Chicago, underwent six
operations from the ages of five to 16, in order to improve her
scoliosis, and donned a full body cast for five months following
her surgeries at 14. “I would be a totally different person
had I not gone through what I did,” she admits.
Despite her
hardships, she too has emerged with an optimistic outlook. When
asked what advice she would give to an adolescent recently diagnosed
with the lateral curvature of the spine, she replied, “They
should know that they are lucky to have something that can be fixed.
Going to clinics and rehabilitation centers all my life showed me
how much worse so many others are.”
Upon the suggestion
of surgery, my parents consulted other doctors for second and third
opinions of my condition, and finally decided against the operation.
My
spine is still curved, and it always will be. I visit a chiropractor
every two months, who suggests that my active athletic lifestyle
assists in keeping my spine aligned. I am living with scoliosis,
and other than the occasional lower back pain from standing or sitting
in one position for an extended period of time, I am healthy. Now,
nobody even realizes that I have a spinal condition.
Gianaro and
Giardinelli also have few physical limitations in their adulthood.
“I bike, run,
play racquetball, yoga (although abbreviated), tennis, horseback
ride, and whatever else comes to mind,” says Gianaro, who
once suffered from a curve measuring nearly 200 degrees. “The
only sport I can’t seem to conquer is golf, but I’m
not sure if it’s because of a lack of flexibility in my back
or just a lack of talent.”
Giardinelli’s
only limitation after her spinal fusion surgery is that she can
no longer do somersaults.
Her advice
to adolescents recently diagnosed with scoliosis seems most appropriate.
“I can only say try your best to keep the long view in mind,
not the short term.”
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