Sunday, 22 March 2015

Setting the curve: San Clemente teen won't let scoliosis shape her fate

Juliette Clark is not one to sit still for very long.

Juliette Clark began playing water polo at age 8 after watching the sport on television during the Olympics. She normally plays 2-meter set defense for her San Clemente Tritons Water Polo Club team, which won the 12U Junior Olympics gold medal

Juliette Clark receives a visit from her parents, John and Manya, after the first of her two surgeries at Children's Hospital Los Angeles in February 2014.

Juliette Clark was not a fan of the hospital gowns, so her family made her a more vibrant, colorful gown, which was later called the Juju Gown.

The vibrant, goofy 13-year-old, known to her family and friends as Juju, loves being active. Her most comfortable setting is the pool, where she shines playing for the San Clemente Tritons Water Polo Club.

But what happens when a scoliosis diagnosis could force her to stop playing altogether? In Clark’s case, she felt there was only one option: Get through it and keep playing.
Clark was diagnosed with scoliosis, a condition in which the spine is curved, at age 11 in October 2013.She required surgery in February 2014, with the risk that it could limit her mobility.
“I remember when she was first told of her condition, she wasn’t completely aware of what it was, but she knew she didn’t want to be sick,” said her older sister, Alleanna. “After the realization that something could be wrong, she calmed down and realized that being that way wouldn’t make anything better.”
Through faith, hard work, determination and a positive attitude, Clark is now as strong, if not stronger, in the pool than ever before.
“We were told immediately that she would have to have surgery, we just came to terms with it,” her father, John Clark, said. “All three of our girls play water polo and through all the families we met, that got us through it.”
Clark has always been a hard worker when it comes to water polo. The second of John and Manya’s three daughters began playing the sport at age 8 after watching on television during the Olympic Games.
She’s a true utility player, said Pat Higginson, coach of Saddleback College and father of one of Clark’s teammates.
Clark normally plays 2-meter set defense, though she’s also an excellent outside shooter and has the ability to change the momentum of a game with her perimeter strikes.
San Clemente High varsity coach Logan Powell coined a phrase to describe it at the 2014 Junior Olympics: “Juju Madness.”
“It was in the last game of the Junior Olympics, he said something to Juliette before he sent her out,” Manya Clark said. “All of a sudden, she came in with a different kind of enthusiasm and fire.”
Until recent years, scoliosis could easily be checked by school doctors.
In Clark’s case, her family doctor discovered the condition. Her spine had two curves of 60 degrees each.
Without surgery, the curves would become more pronounced and Clark’s movements would be limited. Surgery was the only option.

During the Clarks’ first visit to a surgeon, it was recommended that she stop playing water polo competitively, instead playing for recreation, due to limited flexibility after surgery.
“It was pretty upsetting for her,” Manya said.
Her surgery required the insertion of metal rods and screws onto the vertebrae, which remain in place to keep the spine as straight as possible.
But quitting competitive water polo was not in Clark’s game plan. She loved being in the water and loved

The family sought a second opinion, traveling to Los Angeles to meet with Dr. David L. Skaggs, an expert in scoliosis surgery, at Children’s Hospital Los Angeles.
Not only did Skaggs believe Clark would play water polo again, he believed she’d be back in time to start her ensuing club season.
“In my opinion, it’s better a broken bone than a broken spirit,” Skaggs said. “You can fix a broken bone. Sports is such an important part of many kids’ psyche, and I feel that we should take care of both their mind and their body.”
Clark’s one request was to wait until after her 12th birthday to have surgery.
She played in tournaments up to the Sunday before surgery. Her family also took a trip to Knott’s Berry Farm to allow Clark to enjoy another hobby: roller coasters.
While Skaggs was performing surgery on Feb. 4, 2014, something happened.
Skaggs noticed signals from Clark’s brain to her body stopped working, causing temporary paralysis.
Skaggs stopped surgery and informed the family of his next move: a “halo treatment” that attaches a ring to Clark’s skull, adding weight to the top of the device to stretch her spine, allowing electrical impulses to carry through during and after surgery.
“It takes a lot of guts to come out and say that you’re stopping the surgery and you’re drilling into someone’s head,” John Clark said. “We dropped to the floor, but we trusted him and she handled it just fine.”
The family documented the entire process through pictures, videos and recorded audio.
Documentaries are a hobby for John and Manya Clark, and the entire family jumped aboard. Instead of the normal hospital gowns, the family made a special gown for Juliette filled with bright colors and designs. They called it the “Juju Gown.”
All of these actions kept the mood light and positive, and though the halo treatment forced her to stay in bed or in a wheelchair for eight days, she was up walking and talking with fellow patients and nurses whenever possible.
“I didn’t want to look back on it as a bad experience, so I decided to focus on the good things,” Clark said. “Dr. Skaggs made me feel like I was in good hands and I knew that with him, I would have a good outcome.”
On Feb. 12, 2014, Skaggs tried the original surgery again, and while the spine wasn’t set completely straight, it was a significant improvement.

As Skaggs promised, within eight days of the surgery, Juliette was back on a pool deck supporting her sister. Within seven weeks, she was well within a rehab program at Signature Physical Therapy in San Clemente. She was also back in the pool swimming.
Clark’s will and determination to get back in the pool was the driving force behind her ability to play for the SC Tritons 12U team at the Junior Olympics at Stanford five months after surgery.
Though it was painful at times, Clark would get in the pool whenever possible and would take multiple trips to the gym with Alleanna, who was preparing for her sophomore year on the high school varsity team.
“She didn’t want to be confined to anything, she always wanted to get up and start doing,” Alleanna said. “What made her the most upset was when she couldn’t get up or move around. Water polo was important because it gave her a goal, something to keep working towards.”
Clark admitted feeling anxious about her first game and it showed. She wasn’t as aggressive and worried that she would be limited in the pool.
However, with the support of her teammates, by the time her team made the semifinals, everyone at the pool deck knew that the old Juliette had returned.
“I was a little nervous that she would push it too hard, but she obviously knew what to do,” teammate Alex Higginson said. “She was immediately on it, she was really positive and it seemed like she was right back where she was before the surgery.”
Led by Clark’s perimeter shooting and 2-meter set defense, the Tritons 12U team won the Junior Olympics GOLD medal after defeating South Bay United, 11-9.
Now, Clark has her sights on the high school program, where she plans to unleash her “Juju Madness” under Powell’s leadership at the varsity level.
As for the procedure, Clark and her family want to give back with the idea of making Juju Gowns for patients at children’s hospitals. After all, a little faith and positivity can go a long way with making young people comfortable when it comes to surgery, they said.
She’s also proof that scoliosis doesn’t have to limit a person’s physical limits as long as the mindset is there to overcome those fears. One of those she’s inspired is her younger sister Lyla, who has also been diagnosed with mild scoliosis.
It’s become a new part of the Juju Madness.
“She can be a role model for others,” Skaggs said. “She’s a wonderful example of somebody proving what can be done.”

Source: Orange Country Register, 18th March 2015 

Big relief for young scoliosis patients

"Each time you do (conventional surgery), you worry about the risk of infection, the pain, the time lost, the anxiety for patients and their parents," said Associate Professor Gabriel Liu, who carried out Singapore's first such procedure last year.

Big relief for young scoliosis patients

The procedure involves implanting magnetically controlled rods and the first person to undergo this new surgery is Joycelyn Ng, seen here with Associate Professor Gabriel Liu.

Scoliosis is a condition where the spine curves sideways. Although it may not cause pain, it can affect lung function.

Those with a curve of 45 degrees or more usually require surgery, said Prof Liu, who is deputy head of the University Spine Centre.

The centre's specialists see an average of 700 children for scoliosis every year.

For those who require surgery, the rods in their backs must be periodically lengthened to accommodate their growing spines.

A seven-year-old, for example, may have to undergo as many as eight spinal operations until he reaches adolescence and is ready for the final surgery to fuse his adult spine in place.

Implanting the rod and each subsequent adjustment used to involve making a long cut down from the top of a patient's spine.

But the new technique at NUH is less invasive. The magnetically controlled rods are put in via smaller incisions, and subsequent adjustments can be carried out in the doctor's clinic.

"This method reduces the complications of multiple repeated surgery," Prof Liu said.

Adjustments can also be made more frequently, he added, which could help the spine to grow better.
The first person to undergo this new surgery is 12-year-old Joycelyn Ng.

Since going under the knife nine months ago, she has been coming back for adjustments of a few millimetres each time at three- month intervals.

Her mother, Madam Esther Chow, said she had concerns over how new the procedure was, but also wanted to save her daughter the pain of frequent operations.

"Before it, her back would hurt," said the 43-year-old housewife. "We are very comforted now."

Source: Asia One - Your health Via Strait Times,19th March 2015 

Advances in scoliosis treatments allow for more mobility, quicker recovery times

Skylar Wendt, 13, of Appleton has a brown belt in karate and is working diligently toward her black belt. Given how active she is, her parents, Carrie and Brad Wendt, say you probably wouldn't realize she has scoliosis.

APC f FF scoliosis 1.jpg

"It doesn't seem to affect her," Carrie said. "She is very active in her karate. I don't think it slowed her down any."
There are many forms of scoliosis, said Dr. Sumon Bhattacharjee, a neurosurgeon with the Neuroscience Group in Neenah. Bhattacharjee has a special interest in managing patients with scoliosis and received specialized training in surgical interventions related to spinal deformities in adults and pediatric patients.
"Scoliosis is kind of a generic term that we use for what we call curvature of the spine," he said. "Nowadays we're more inclined to use the word spinal deformity, which is to mean an abnormality in the curvature of the spine.
"Adolescent idiopathic scoliosis is what we see in middle school and going into early high school. It's much more prevalent in females than males, suggesting some genetic aspect behind it. We have genetic markers that tell us that these are scoliotic genes, but we have yet to establish a direct relationship between who will exactly have it. We don't have a one-to-one predictor, but there's a huge amount of genetic correlation and growth pattern changes that contribute to developing scoliosis."
Bracing is an option for patients, said Dr. Lee Segal of the University of Wisconsin School of Medicine and Public Health. He typically will discuss treatment in children if they have sufficient growth remaining and the curve is more than 25 degrees. The goal is to prevent progression of the deformity.
"Unfortunately, most bracing systems that are used don't improve or decrease the deformity or the magnitude," Segal said.
The natural history of scoliosis shows that if the scoliosis curve is more than 50 degrees it tends to progress as an adult, he said. If it's less than 30 degrees, it tends not to.
"There is a gray zone between 30 and 50, but if we can keep those curves as low as possible, hopefully we can prevent the need for recommending surgery or even considering surgical interventions," Segal said.
Skylar was diagnosed when she was 3 through her pediatrician, who then referred them to a specialist from American Family Children's Hospital in Madison. A yearly X-ray was done to watch the curvature.
In Skylar's case, her scoliosis progressed from 40 to 65 degrees in one year so surgery was necessary. Her procedures were done in October and January, and she was required to wear the brace temporarily afterward.
Segal said that while surgery is not to be taken lightly, recovery times have vastly improved over time.
"We're trying to selectively fuse parts of the spine to preserve motion. Hospitalization now is often no more than four to five days. We get kids up and moving the next day."
"There are people on the United States Olympic Team who have scoliosis," Bhattacharjee said. "There are professional golfers who have had scoliosis surgery, and they are able to be athletic. I have patients who play high school sports, who play after having scoliosis surgery. And over time we have refined our treatment so for the select few who get an operation, it's a manageable thing. Your life doesn't come to an end because of scoliosis."
The way scoliosis is treated has changed significantly, Segal said, even in the 30 years since he started practicing.
"Back in the 1950s and before, children with scoliosis would have a spine fusion where they would just fuse the spine and children would be in a cast for up to six months or longer," said Segal, whose practice focuses on pediatric orthopedic surgery. "The cast was like an external brace, so to speak, to allow the fusion to become solid and prevent progression of the deformity."
It was about 1960, he said, that the Harrington Rod System — a single rod with one hook above and one hook below to act like a strut in the back — was used in patients with scoliosis. Previous to its use for scoliosis patients, it was used for patients with polio.
"Since that time, there have been many, many advances in the field of spinal instrumentation to allow for better outcomes that can be more safely done, that can achieve a better correction and that allow the spine to be fused in less segments so the extent of the fusion is smaller so the children have more mobility," Segal said.
Skylar's father, Brad, said she was back in school three weeks after surgery.
"She is just one tough kid. We're so proud of her."
— Meghan Diemel: pcfeatures@postcrescent.com
Scoliosis resources
Dr. Lee Segal of the University of Wisconsin School of Medicine and Public Health recommends the following resources for parents:
» Scoliosis Research Society, 555 E. Wells St., Suite 1100, Milwaukee, WI 53202-3823; 414-289-9107; info@srs.org; www.srs.org
» American Academy of Orthopaedic Surgeons, 9400 W. Higgins Road, Rosemont, IL 60018; 847-823-7186; http://aaos.org

Source: The New Star , 15th March 2015 

Former Birmingham model Ayesha Jones who battles with scoliosis sees self portraits on show at NEC

Ayesha Jones self portrait
Ayesha Jones self portrait
A former Birmingham model who has captured self portraits of herself coping with a curved spine will see her images displayed at The Photography Show at the NEC this weekend.
Ayesha Jones, 24 from Hall Green, was diagnosed with scoliosis at the age of 13 and her doctor told her that, without surgery, she’d be a “pretty girl with an ugly back”.
Scouted at the Clothes Show Live then rejected by modelling agencies because of her condition, Ayesha turned the camera on herself and created an inspiring photo documentary of her journey through physiotherapy, holistic treatment and ultimately surgery.
She then took portraits of other sufferers to empower them and show them how good they look.

Ayesha Jones

Ayesha Jones self portrait

Ayesha Jones self portrait using a timer

Ayesha Jones self portrait following surgery

Ayesha Jones self portrait

Ayesha Jones self portrait

Picture by Ayesha Jones for the Scoliosis Association

Photograph by Ayesha Jones for the Scoliosis Association

Ayesha Jones having treatment on her back

Photograph by Ayesha Jones for the Scoliosis Association

Picture Ayesha has taken for the Scoliosis Association

Picture Ayesha has taken for the Scoliosis Association

Her incredible work has been noticed by Magnum Photos and she’s one of its '30 under 30' photographers taking part in The Photography Show from March 20-24 at the NEC.
“I wanted to tackle the way women are portrayed and I thought I’d do it through a fashion shoot,” she said.
“Then I realised that was just the same thing, that I was using them in a way.
“So I turned the camera on myself.
“I found it was like photo therapy, looking through the album of my journey, my exercises, treatment and surgery, and thinking about what it means to be accepted by society.
“I took ownership of my body image again rather than trying to re-educate others, I took control back and photography helped me to do that.
“When I showed the photographs to people, they said they could relate to them, even if they didn’t have scoliosis. They said ‘that’s how I feel’.
“It surprised me so I decided to make it into a project called Imperfection.”

Ayesha, whose mum first spotted her rotated shoulder on holiday when she was 13, worked with the Scoliosis Association where she photographed other scoliosis patients to help the charity to create a bank of inspiring images.
“The individuals told me they found it empowering,” says Ayesha, who had spinal fusion surgery two years ago after her condition worsened.
“For me, I cannot express how it feels for the work I have done to have touched someone, made them feel good about themselves and given them hope.”
Ayesha, who is also a filmmaker, has now come full circle, returning to the NEC where she was first scouted as a model. She is one of 30 international photographers exhibiting their winning pictures.
“I didn’t think I’d have a chance in the Magnum Photos competition as all my photos were self portraits done on timers compared to other people who had photographed amazing things from all around the world,” says Ayesha, who beat more than 600 entries from around the globe.
“The competition is called 30 under 30. It’s aim is to find the best documentary photographers under the age of 30, from around the world.
“There is also a people’s choice award for the top three photographers. It would be really great for my career if I won.
“I want my work to have a meaning, and I want to work with other people to share their stories and learn from each other.
“We are all struggling in some way or another. Part of life is to go through struggles and overcome them, not feel you have to hide them away and be perfect.
“It’s about uncovering the veil so people get a better understanding and talk to each other about what’s going on for themselves.”
Watch scoliosis patient Ren Gill's emotive song, which was filmed as part of Ayesha's Imperfection project.
• The show runs from March 20 to 24. To vote for Ayesha in the people’s choice category of the awards, visitwww.photographyshow.com/page.cfm/Action=library/libID=3/listID=5/t=m To find out more about the Scoliosis Association, visit www.sauk.org.uk

Source: Birmingham Mail , 21st March 2015 

5 risk factors for surgical site infection for pediatric scoliosis patients

A new study published in The Spine Journal examines risk factors for surgical site infection in pediatric scoliosis surgery.
The researchers examined 135 abstracts and 14 studies on pediatric patients undergoing scoliosis surgery that reported on SSI. There were five high-quality articles and five that were moderate quality.

The researchers identified 76 risk factors and 22 that were reported in more than one study with the overall odds ratios and 95 percent confidence intervals reported inconsistently. The studies found these factors as predictive:

• Inappropriate antibiotic use
• Neuromuscular scoliosis
• Instrumentation
• Longer hospital stays
• Residual postoperative curve

Source: Beckers Spine, 20th March 2015 

Ballerina's Dazzling Photos Prove Her Scoliosis Is Just A Diagnosis

Gigi Crouch’s gorgeous Instagram photos reveal the life of a ballerina. Her dancing journey, though, has been more than just perfect balance and pointe shoes.
MTV News reports that Gigi has been ballet dancing since she was 11. At 13, she was diagnosed with scoliosis, which meant she'd have to wear a back brace for 18 to 20 hours a day and start physical therapy.

Though the 17-year-old currently has three major curves in her back, she’s never let scoliosis stand in her way. Her Instagram photos prove it.

Using the handle @scolerina9247, Gigi mixes her poised poses with elaborate landscapes. She has more than 59,000 followers and recently contributed toInstagram’s blog, where she explained she recently stopped wearing a brace after wearing one for three years.

On the blog, Gigi also mentioned expanding her creativity for her photos. The ballerina, who attends Pacific Northwest Ballet's Professional Division, enjoys photography and puts a lot of thought into her poses and layouts. Her photos are visually appealing, but what she really wants her followers to take away is that nothing can stand in the way of your dreams.

"I love to try to explore new angles and poses daily to get an output that is innovative, creative and pleasing to the eye. I hope that my pictures inspire others, and show them that nothing can stop you if you have passion.”
Check out more of Gigi's photos below.

Source: Huffington Post , 21st March 2015 


About six million people in the U.S. have scoliosis, an abnormal curvature of the spine. When left untreated, it can get worse and cause chronic back pain. Now with the help of a robot, surgeons can tackle more complex cases with less risk- and better results.

SubmitBonnie Wilson is walking tall today, but she suffered with severe scoliosis for years.

"I was bent to one side." Bonnie Wilson told Ivanhoe.

She tried everything from nerve blocks to cortisone shots, but the intense back pain persisted.

"They'd always say one to 10 and I'd say 50. 20," said Wilson, "I don't know. It was terrible. It was off the chart."

Dr. Andrew Cannestra was able to straighten Bonnie's back through a two-part surgery using new robot technology known as Mazor Robotics Renaissance Guidance System and a 3-D map of the spine.

"It's precise," said Andrew Cannestra, M.D., Ph.D., Neurosurgeon and Director of the Robotic Spine Surgery Program at Baptist Medical Center in Jacksonville, "It's accurate and I can maximize the size of the screw I put in there and that then allows me to exert as much force on the spine as possible to straighten the spine."

Bonnie went from a 38 degree curve, down to eight degrees.

"She has very close to a normal curvature of her spine," Dr. Cannestra told Ivanhoe.

Bonnie is now an inch taller.

"Clothing fits normally, sitting is normal. I don't' have all those muscles getting tired from being leaned one way or the other," Wilson told Ivanhoe.

Letting Bonnie take long walks with Cole without feeling pain.

The robot technology can be used to help with other spine conditions like fractures, reconstructive spine surgery, degenerative disc disease and herniated disc. The new technology has also been used for bilateral deep brain stimulation for Parkinson's disease.

Robotic Spine Surgery -- Research Summary

SCOLIOSIS: Scoliosis is a curvature of the spine that can be caused by cerebral palsy and muscular dystrophy; however the main cause for patients without these conditions is unknown. Typically, scoliosis most often occurs during growth spurts just before puberty. Most cases of scoliosis are mild, and can be corrected in children by having them wear a brace. Severe cases can be disabling, as a severe spinal curve can reduce the amount of space in the chest, causing lungs to function improperly. These types of cases may require surgery to straighten the spine.

TYPES OF BACK SURGERY: Typically, people with back pain or spinal conditions resort to surgery when many other treatments have failed. Each type of back surgery comes with its own risks and benefits. Spinal fusion is the most common back surgery; the vertebrae are joined together, limiting motion between the bones of the spine, as well as the stretching of nerves. In a laminectomy, bone spurs (or ligaments) are removed alleviating pressure on spinal nerves. A foraminotomy procedure is one in which the surgeon cuts away bone at the sides of the vertebrae to widen the space where the nerve roots exit the spine, thereby relieving pressure on the nerves. When a patient has a bulging or slipped disc, which cushions the vertebrae, a surgeon will perform a discectomy to remove all parts of the disk. In a disc replacement surgery, a damaged disc is removed and replaced with an artificial disc, permitting continued motion of the spine. In an interlaminar implant surgery, a U-shaped device is placed between two backbones in the lower back, maintaining the space between. All of these surgeries can be done independently or in a combination depending on the condition of the spine and recommendation by a doctor.

NEW TECHNOLOGY: The Mazor Robotics Renaissance Guidance System is one of the latest tools that increase precision for minimally invasive spine surgery. Specially-trained surgeons use the advanced 3-D planning software to create a tailored procedure for each individual patient. Once in the operating room, the surgeon is guided by this specific blueprint to perform necessary treatments or place implants safely and accurately. The robot is placed over the patient's back during the operation to provide the trajectory. Andrew Cannestra, M.D., Ph.D., and neurosurgeon with Lyerly Neurosurgery at Baptist Medical Center in Jacksonville, Fla., told Ivanhoe, "Precision is the big advantage. Traditionally X-rays are used which expose you to a lot of radiation...this is a way to decrease radiation in the operating room." The tools and implants of this technology are guided with 1.5 mm accuracy, and is also cleared for fusions, deep brain stimulation and Parkinson's disease.


Deborah Circelli
Media and Public Relations Specialist
Baptist Health
(904) 202-4916

For Video: 

Source: http://abc30.com/health/robotic-spine-surgery/567283/