By Lina Abdennabi

June 23, 2017

It’s 2015, and Avital Harris is out on a walk with her family. It’s a hot day. Too hot frankly, and she’s had about enough. Some combination of the heat and playful aggravation that only a little brother can elicit overwhelms her. She loses it.

“I took off my back brace and literally threw it as hard as I could into the woods,” Avital recounts while laughing. “I said, ‘You can get it,’ and walked away. It wasn’t my finest hour.”

Such behavior between a 13-year-old and a younger sibling is certainly not a novel concept, but more than teenage angst played a role in this equation. At the time, Avital had been recently diagnosed with scoliosis. She had received a brace to attempt to halt the increasing curvature of her spine, and while effective, it was cumbersome.

“It’s Minnesota in the summer,” Avital says. “You want to get out and enjoy the weather, and sometimes having the brace made that a little harder to do. I didn’t always handle it very well.”

A Surprising Diagnosis

Adolescent idiopathic scoliosis (AIS) is by far the most common form of scoliosis, affecting children between ages 10 to 18; it’s found in as many as four in 100 adolescents. While heredity may be a factor, the cause of AIS is unknown. It can happen to any child.

Avital’s pediatrician discovered her scoliosis during a routine checkup and referred her to spine surgeon Tenner Guillaume, MD, at Gillette Children’s Specialty Healthcare.

“When you’ve been healthy your whole life, it can be kind of jarring to have something like this happen to you,” Avital recalls. “When Dr. Guillaume said that my spine curvature came right up to the point of requiring surgery, I thought, ‘This can’t be happening.’ I was freaking out.”

Looking on the Bright Side

Despite the anxiety and fear that accompanied her diagnosis, Avital also felt relieved:  Her pediatrician had caught her scoliosis just in time to avoid surgery. Instead, she could wear a back brace. “The process seemed a lot less scary and would allow me to remain flexible in the long-term so that I can play sports. My friend had a brace before, so I was more familiar with it.”

At Gillette, Avital was fitted with a brace after being casted in different standing positions to ensure comfort. The fun part came when she had the chance to pick a design for her brace. She opted for the New Orleans Saints logo, in honor of her father’s hometown. A week later, Avital received her brace and started wearing it 20 hours each day in an effort to correct her spine curvature.

The careful and comprehensive approach that addressed all of her possible treatment options made Avital’s experience at Gillette special, as she explains. “Everyone that I met made me feel like my opinion was important. They planned my treatment around what my goals were, and made sure all of my questions were answered before moving forward. It was really important to my doctors that I understood everything that was going on.”

As an added bonus, she says, “I learned a lot of new vocabulary from sitting in appointments with Dr. Guillaume and my parents.”

Avital’s experience at Gillette also altered her perspective on life. “Most of the patients I met were younger than me, and many of them had more serious conditions,” she explains. “They were working to overcome so many obstacles yet remained full of life and happiness. The courage I saw every day was inspiring; it encouraged me to always look on the bright side and not let my condition stop me from achieving my goals.”

‘It’s Not So Bad!’

Although going back to school wearing a brace wasn’t necessarily a concern for Avital because it would barely be noticeable underneath her clothes, she admits, “I wasn’t looking forward to explaining why my back was so hard when friends would hug me, or why I had such perfect posture all the time. I would wear huge sweaters so that nobody would be able to detect it.”

Getting used to sleeping in her brace soon began to feel natural for Avital, and the few hours a day that she didn’t need to wear it, she would go swimming. As she got used to wearing it every day, Avital describes it as more annoying than anything else. “My friends would try my brace on and tell me ‘It’s not so bad.’ But I’m sure they wouldn’t say that if they wore it for 20 hours a day, especially in the summer!”

Aside from the genuine curiosity from friends and family, Avital didn’t appreciate people feeling sorry for her because of her scoliosis. It didn’t feel right, because Avital knew she was going to be OK. She didn’t see herself any differently than others, and did not want to be treated as such.

No More Oversized Clothing

Besides being an active swimmer and a basketball and ultimate Frisbee player, Avital is also a young entrepreneur in-the-making. At just 15 years old she is already working on a business plan to develop a clothing line that will accommodate kids who wear braces. “Scoliosis is very common–a lot of people have to wear a brace, and I don’t think it’s fair for anyone to struggle to find clothing that fits and is still flattering,” she says.

After two years of wearing her brace nearly 24 hours a day, Avital’s Gillette team had happy news—she could begin to phase it out. She began with not wearing it to school, then only during sleep. Now, as she gets ready to enter her sophomore year of high school, Avital is excited that she doesn’t need to wear her brace anymore. The curvature in her spine that once reached 45 degrees now sits in the low 30s, and Avital is eager to transform her experience into change.

“I want kids who have scoliosis to know that they don’t need to feel afraid or ashamed about their brace and condition. I want them to know that even though committing to wearing a brace all the time is hard work, it will pay off and they will be just fine.”

The feeling of being back in her old dance studio brought back a ton of memories for Melissa Gonzalez.

“I started dancing when I was three,” she said proudly, in her green USF Bulls shirt.

The Xtreme Dance Company of Tampa practice room is where Gonzalez spent six years perfecting her craft. It’s where endless leaps, spins, and bends propelled her to her dream of making the USF SunDolls dance team.

It also represents a place where she thought dancing may end.
“It eventually got painful as the curve got worse,” said the 19-year old.

Her pediatrician discovered scoliosis at a routine checkup when Gonzalez was 12-years old. The next five years she tried therapies and, a back brace but nothing worked.

She needed corrective surgery.

Dance may be over.

“That was very serious. That was my number one question to my doctor,” she said.

Gonzalez underwent spinal surgery in 2015 at the Children’s Scoliosis Center at St. Joseph’s Children’s Hospital in Tampa. Since then, she graduated from Tampa Catholic High School, won a state dance championship, won runner-up for the Miss Florida preliminary pageant, and enrolled at USF Honors College, where she is a second-year veteran of the USF SunDolls Dance Team.

The life-change has been profound.

“Complete strangers have contacted us and said, ‘My daughter has scoliosis. I didn’t think this was possible’,” said Gonzalez’s mother, Vickie.

Melissa is now studying to become a pediatric orthopedic surgeon, so she can help children who are dealing with scoliosis have positive outcomes like hers.

“I’ve always wanted to be a doctor but this surgery really changed my life and I want to help change other people’s.”

“There have been incredible breakthroughs in medical technology and those living with scoliosis have very real options for treatment,” said Dr. David Siambanes, director of the Children’s Scoliosis Center at St. Joseph’s Children’s Hospital in Tampa, and the surgeon who performed Gonzalez’s surgery. “Melissa’s story is wonderful and unique, but recovery results like hers are increasingly more common, where most patients are able to experience a normal life after treatment.”

Melissa has gotten to shadow her surgeon in preparation for her career and watch him perform the same procedure that she underwent.

According to the National Scoliosis Foundation, Scoliosis affects up to three percent of the U.S. population. That figure equates to roughly seven million people nationwide.

The 28-year-old model has admitted she suffers from the medical condition, which is when a person’s spine curves
sideways, and in honour of Scoliosis Awareness Month the star has collaborated with the company to create a
choker necklace, which will see all of the proceeds raised from purchasing the item go towards Scoliosis Research
Society.

And the blonde-haired beauty is “excited” to launch the product and recognise those who, like her, battle with the
disease.

Alongside a picture of the catwalk icon adorning the garment, which was shared on her Instagram account, she
wrote: “I’m so excited to launch this necklace collaboration with @pluma_italia in honor of those living with
#scoliosis! I’m proud that percent of the proceeds will benefit Scoliosis Research Society. (sic).”

And Martha has named the product after her mother because her parent was her “biggest supporter” during her
“scoliosis journey”.

She added: “I named the necklace after my mother, my biggest supporter throughout my scoliosis journey! Big
thank you @luisaviaroma. Shop the #linkinbio #gotyourback (sic).”

And the brand was honoured to work with Martha on the product.

A post on Pluma Italia’s photo-sharing site read: ” Scoliosis Awareness Month

We had the honor of co-designing necklaces for @marthahunt to raise awareness for scoliosis. (sic).”

Martha’s fellow Victoria’s Secret model, Sara Sampaio, is also “so proud” of her friend for her latest venture and by
making the illness more well known because she also battles with the condition.

The 25-year-old fashion muse posed in a picture on social media, which captured her wearing the product with a
black bralette and denim jacket, that she captioned: “As someone who also has scoliosis I’m so proud of my girl
@marthahunt for creating this necklace in collaboration with @pluma_italia. 100% of the proceeds will benefit the
scoliosis research society! #gotyourback (sic).”

O&P News, July 2017

ClinicalTrials.gov identifier: NCT03017755

Purpose: This survey aims to help understand the influences related to the decision
for adolescent idiopathic scoliosis (AIS) treatment (observation vs. bracing vs.
surgery). The investigator plans to create a decision aid to help families make a
decision about the treatment choice being presented to them.

Study type: Observational

Study design: The study will use a cohort observational model and prospective time
perspective.

Estimated enrollment: 1,000

Eligibility criteria: The ages eligible for this study are 13 years or older. Both genders
are eligible. Healthy volunteers are not accepted. The sampling method is nonprobability
and the study population is AIS patients and their families. Inclusion
criteria: Subject and/or parent of subject who has previously been treated for AIS.
Exclusion criteria: Age younger than or equal to 12 years.

Study start date: April 11, 2017

Estimated study completion date: December 2018

Estimated primary completion date: December 2018 (final data collection date for
primary outcome measure)

Primary outcome measures: The primary outcome measure is to analyze the
number of subjects who have completed the survey (time frame: baseline,
approximately 3 years).

Secondary outcome measures: None

Sponsors and collaborators: Mayo Clinic
Contact: Vickie M. Treder, (507) 538-3561, treder.vickie@mayo.edu.
Information acquired from: Mayo Clinic, via ClinicalTrials.gov

Written by Mackenzie Garrity | Wednesday, 28 June 2017 20:35

A study published in Spine examined the revision rates after scoliosis surgery in adolescents and
young adults. The study included 1,435 patients who underwent surgery from 1995 to 2009.
Results showed revisions for scoliosis surgery continue to occur well after two years with late
infection being the most common cause.
Here is what you need to know.

1. A majority of the patients – 81 percent – underwent posterior spinal instrumented fusion.

2. The leading cause of early revisions was implant-related issues and infections. The reason for
reoperation wasn’t uniformly distributed over time, which additional causes wound complications,
residual deformity and/or progression and pseudarthrosis.

3. After the study, 75 or 5.2 percent of patients required reoperation.

4. Of all reoperation surgeries, 22 occurred within three months, 10 before one year, 12 before
two years, 20 before five years and 10 after five years.

5. Survival rates were as followed: 98.3 percent at three months, 97.5 percent at one year, 96.6
percent at two years, 93.9 percent at five years and 89.8 between five and 10 years.

Luhmann SJ , Smith JC.

Abstract

BACKGROUND:  Surgical-site infections are one of the most concerning complications in patients treated with growing rods (GR). The purpose of this study was to evaluate the use of preoperative screening for Staphylococcus aureus (SA) for all growing spine procedures, and if this would permit alteration of prophylactic antibiotics to cover the identified resistances.

METHODS:  All patients were identified who had SA screening during the course of GR treatment. In total, 34 patients [23 neuromuscular (NMS), 4 congenital, 4 idiopathic scoliosis (IS), and 3 syndromic] were identified who had 111 preoperative screenings [79 lengthenings, 23 insertions, 6 revisions, and 3 conversions to posterior spinal fusions (PSF)]. Mean age at GR insertion was 5.5 years (2 to 11 y).

RESULTS:  There were 11 methicillin-resistant Staphylococcus aureus (MRSA) “+” screenings in 6 patients (5 NMS, 1 IS): 3 in 3 patients before GR insertion and 8 in 3 patients (all 3 were negative at GR insertion screening) at subsequent surgeries. There were 23 methicillin-sensitive Staphylococcus aureus (MSSA) “+” screenings in 12 patients (7 NMS, 2 congenital, 2 IS, 1 syndromic): 2 in 2 patients before GR insertion and 21 in 10 patients at subsequent surgeries (18 lengthenings, 3 revisions). Overall, 13 patients (3 MRSA+10 MSSA) were initially negative but screened positive for the first time at a subsequent surgery (12 lengthenings, 1 GR to PSF). All patients (n=5) with positive screenings before GR insertion were in patients with NMS (3 MRSA, 2 MSSA). On the basis of sensitivities, 9 patients demonstrated SA resistance to cefazolin (8 MRSA and 1 MSSA) and 6 to clindamycin (5 MRSA and 1 MSSA). Hence, if cefazolin was routinely used for all patients 26.5% of patients (9/34) would have been inadequately covered at some point during their GR treatment; clindamycin, 17.7% (6/34).

CONCLUSION:  The use of SA nasal swab screening in GR patients identified 9 patients (26.5%) whose prophylactic antibiotics (cefazolin) could be altered to permit appropriate SA coverage.

LEVEL OF EVIDENCE:  Level IV-retrospective case series.

Good Morning America anchor George Stephanopoulos and his wife, Ali Wentworth, revealed on social media that their 14-year-old daughter has scoliosis.

The couple both shared posts to their individual Twitter accounts on Monday morning writing that they are proud of their daughter, Elliott, for wearing her brace everyday.

‘So proud of my daughter wearing her brace every day! #LeaningUp #NationalScoliosisAwarenessMonth’, the 52-year-old actress tweeted.

Her father tweeted a similar message and wrote: ‘So proud of my daughter Elliott. Wearing brace every day. #NationalScoliosisMonth’.

In revealing the information about Elliott, the couple of 16 years posted the same photo collage of the teen standing outside wearing the brace, which usually helps the curve from worsening those who are affected.

Elliot is the couple’s oldest child, as they also have another daughter, Harper, who is 12 years old.

Many Twitter users sent the couple well wishes of support and encouraging the teen after they shared the information about her in an effort to raise awareness.

‘She’s absolutely gorgeous! Proud of her for knowing her health is most important. She’s someone for kids her age to look up to’, one Twitter user wrote.

Many Twitter users sent the couple well wishes of support and encouragement to Elliott. She is pictured above left in 2016 and right in 2010 cutting a cake as her dad holds her younger sister

Another person tweeted, ‘Rock on Elliott! Not easy, but worth it. I had one for two years in middle school. Much love! #NationalScoliosisAwarenessMonth’.

Scoliosis is a sideways curvature of the spine that happens most often in teens during the growth spurt right before puberty, according to the Mayo Clinic.

The cause of most scoliosis is unknown, but it can sometimes be linked to conditions such as cerebral palsy and muscular dystrophy.

Often times the cases of scoliosis are mild, however, some children can develop spine deformities that continue to become severe as they grow.

It seems as though the couple shared the information about Elliot in an effort to raise awareness for scoliosis. The family is pictured above in 2014 at the ‘Penguins of Madagascar’ premiere

Severe cases can become disabling, as it can reduce the amount of space within the chest making it hard for the lungs to function properly.

Doctors monitor children who have mild scoliosis cases closely with X-rays to determine if it is getting worse.

Most cases require no treatment, but some who are affected are required to wear a brace to stop the curve from worsening.

More severe cases require some to undergo surgery to keep it from worsening.

WHAT IS SCOLIOSIS?

Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty.

While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown.

Most cases of scoliosis are mild, but some children develop spine deformities that continue to get more severe as they grow.

Severe scoliosis can be disabling. An especially severe spinal curve can reduce the amount of space within the chest, making it difficult for the lungs to function properly.

Children who have mild scoliosis are monitored closely, usually with X-rays, to see if the curve is getting worse. In many cases, no treatment is necessary.

Some children will need to wear a brace to stop the curve from worsening.

Others may need surgery to keep the scoliosis from worsening and to straighten severe cases of scoliosis.

Local Ooltewah teen Kaitlyn McAfee, has reached out to Governor Bill Haslam

for the last four years to ask him to proclaim June as National Scoliosis

Awareness Month.

Ms. McAfee, diagnosed with scoliosis at age 12 has been an advocate for

scoliosis awareness since her own diagnosis. Since her spinal fusion surgery,

she founded Color the Curve the official fundraising event of the National

Scoliosis Foundation, donating nearly $60,000 for scoliosis research. She

created The Curve Scoliosis, the official statewide support group for scoliosis.

Ms. McAfee serves on the National Scoliosis Foundations Angel Brigade, as

Cofundraising director for the National Scoliosis Foundation and plans to offer

free scoliosis screenings to middle school age children this fall.

“Early detection of scoliosis is important and schools in Tennessee are no

longer required to screen for it,” officials said. “Kaitlyn is a strong advocate for

early detection and supporting anyone facing a scoliosis diagnosis.”

For more information visit https://www.facebook.com/colorthecurve.

The next Color the Curve event will be a glow run held on June 30, 2018 at Coolidge Park. Participants from all over the world are expected to participate. Scoliosis is a sideways curvature of the spine. Severe scoliosis can be disabling.

Tristan was about 4 months old when his mom Nikki thought his spine
looked a little crooked and mentioned it to her husband Pat. “He’s a baby,”
Pat said. “They all lean to one side. Don’t worry so much.”

But a few weeks later, a daycare worker noticed a lump on Tristan’s back. His parents took a
closer look and knew something was wrong.

The family’s pediatrician agreed Tristan’s spine was curved, but believed the baby would grow
out of it. He said it would be extremely rare for an infant to have scoliosis, a spinal deformity
that typically affects adolescents and teens. But because Tristan’s parents were so concerned,
the pediatrician referred the family to the Spine Program at Children’s Hospital of Philadelphia
(CHOP).

Finding experts

In December 2015, Tristan’s family met with Patrick J. Cahill, MD, a Pediatric Orthopaedic Surgeon with expertise treating children with
complex spine conditions, and Susanne Manzoni, RN, at CHOP Specialty Care & Surgery Center in Bucks County, near the family’s
home in Warrington, PA.

Dr. Cahill noted that Tristan was leaning abnormally to the right and his ribs appeared to protrude on his left side — strong indicators of
scoliosis.

Dr. Cahill explained scoliosis often has no known cause, and early-onset scoliosis — which he believed Tristan had — can affect very young children. An X-ray showed that Tristan had a 36-degree spinal curve and a 23-degree spinal rotation. To achieve the best outcomes for Tristan,
treatment should begin immediately, Dr. Cahill advised.

Infant scoliosis treatment options

Two treatments were possible at Tristan’s young age: traditional bracing and serial body casting. Dr. Cahill informed the family about
both options, but said the ultimate decision was theirs.

Back bracing has been around for generations and has proved to be very successful in halting the progression of scoliosis. Custom-made
back braces reduce pressure on the lower back and help prevent a child’s condition from worsening. However, many children who
receive this non-invasive treatment will later require spine surgery to permanently straighten the spine.

Serial body casting is a treatment becoming more widely adopted that is often recommended for children between the ages of 6 months and 6 years with X-ray measurements that indicate their spinal curve will likely get worse. Unlike a brace, the cast has the potential to partially or
completely straighten the curve, which could delay or prevent the need for later spine surgery.  In order for the cast to be applied, the child must go under anesthesia, which can be frightening for parents.

“We knew Tristan was going to need casting eventually but we didn’t know if we should wait
until he was a year or 18 months old to start,” Nikki says.

But Tristan’s parents kept thinking about what Dr. Cahill had said about casting: the sooner it started, the better the outcome. And, casting offered something bracing didn’t — the possibility of a cure. They decided to start serial casting at Children’s Hospital of Philadelphia with Dr. Cahill when Tristan was 6 months old.

Casting at 6 months old

In February 2016, Tristan’s family came to CHOP’s Main Campus for his first casting procedure. Board-certified pediatric anesthesiologists with special training in the effects and dosages of anesthesia in children administered Tristan’s medication. Surgeons then used the elongation-derotation-flexion technique to gently manipulate Tristan’s spine into a straighter position.

Once his body was being held in the proper position, a custom-built body cast (known as a Mehta cast) was formed around his torso. The plaster cast covered Tristan’s trunk from his arm pits to his pelvis, and had a cutout for his belly. The procedure took less than 45 minutes, and Tristan was able to go home the same day.

For a few days after the procedure, Tristan was a bit cranky and uncomfortable as his body adjusted to the new position of his spine, his mom says. But the baby quickly returned to his normal, bubbly self.

Path to a cure

Every six weeks, Tristan returned to Children’s Hospital to have the old cast removed, X-rays taken and a new cast applied. Because Tristan was so young, his spine was very flexible —making him an ideal candidate for the serial Mehta casting that was slowly straightening his spine.

Weekly physical therapy sessions helped Tristan adjust to the bulky cast and reach developmental milestones like crawling and walking.

On Dec. 4, 2016, the final cast was removed. X-rays confirmed the therapy worked: Tristan’s spine curvature was less than 10 degrees — within normal range. He no longer has scoliosis.

“Fifteen years ago, Tristan wouldn’t have had this opportunity,” Pat says. “He wouldn’t be cured by age 2.”

A bright future

Today, Tristan wears a temporary back brace to ensure his spine curvature doesn’t return as his spine continues to grow and harden. The brace has a hard shell and soft lining like the cast did, but it’s less bulky and can be removed for an hour each day.

Under the care of Dr. Cahill and Jason Smith, PA, Tristan will be gradually weaned off the brace, decreasing the number of hours he wears it each day until it is no longer needed.

For now, Tristan is just enjoying being a toddler. He loves running around, going down the slide at the playground, watching Elmo, and spending time with his 4-year-old brother Brayden and 8-month-old sister Charley.

“Tristan is a really happy kid,” Nikki says. “He’s very affectionate and very determined. He doesn’t let anything slow him down.”

Paying it forward

Tristan’s family says they had a “great experience” at Children’s Hospital of Philadelphia. “Dr. Cahill and Susanne were very
knowledgeable and accommodating,” Nikki says. Pat adds, “We could not have received
better care.”

The family was so grateful to CHOP for the care they received that they have organized an Early-onset Scoliosis Awareness Day with the
Philadelphia Phillies.

Hundreds of families will attend a game to celebrate children with early-onset scoliosis, raise funds to support scoliosis care and research at CHOP, and help build a local early-onset scoliosis support network in the greater Philadelphia metropolitan area.

“We want to celebrate kids like Tristan and publicly recognize all they’ve been through,” Nikki says. “We wouldn’t be here today without the Children’s Hospital of Philadelphia.”