School Board Chair Melody Johnson's youngest child was home recovering from invasive surgery for severe spine curvature when classes started up

Chase Johnson, 13, underwent surgery for curvature of the spine / Headline SurferPhotos for Headline Surfer / Chase Johnson , 13, is shown outside his family's home after his stay at Nemours Hospital in Orlando for surgery for spinal curvature. To his left is an X-ray of his curved spine after surgery. As shown in the post-surgery x-ray, 23 pedicle screws and two titanium rods were placed in the thoracic region of the spine. The titanium rods cause his height to increase by 2 inches. Chase, shown above, after his discharge from Nemours, now stands at 5 feet 5 and weighs 88 pounds. At left, an x-ray taken prior to the surgery shows the spinal curvature. And he's shown with bandages covering his spinal area following the invasive surgery.

Headline Surfer created a video tribute for Chase Johnson on Aug. 12, in advance of this story. In one week on YouTube, it has generated 6,058 views and 309 likes. 

By HENRY FREDERICK
Headline Surfer

DELTONA, Fla. -- School Board Chair Melody Johnson's youngest son son skipped the first week of classes. 

And he'll miss several more as he's being home schooled while recovering from invasive surgery at Nemours Children's Hospital in Orlando on July 31, for Adolescent Idiopathic Scoliosis or curvature of the spine. Chase Johnson, 13,  went home on Aug. 4, a day earlier than expected. 

The Galaxy Middle School eighth grader could return to the classroom as soon as Sept. 5, where he is enrolled in the STEM program, advanced college prep courses in science, technology, engineering and math.

"He is improving," his father, Nathan Johnson said, but was quick to point out that healing is going to take some time. "He cannot do sports, cannot carry a back pack to school. He cannot ride a bike." 

All of these restrictions are in place for the next three months.

That's because Chase's back is adjusting to 23 pedicle screws and two titanium rods and some wires inserted in the thoracic region of the spine to help correct the curvature, which was at greater than 70 degrees prior to the surgery, the father said. 

Chase can walk, but he cannot twist, turn or bend his back for at least three months.

Chase Johnson and surgeon Robert Stanton / Headline Surfer"He is improving," his father, Nathan Johnson said of his son Chase, shown here with Dr. Robert Stanton, the surgeon at Nemours Children's Hospital after surgery. But the optimistic father was quick to point out that healing is going to take some time.

"He cannot do sports, cannot carry a back pack to school. He cannot ride a bike." 

All of these restrictions are in place for the next three months. That's because Chase's back is adjusting to 23 pedicle screws and two titanium rods and some wires inserted in the thoracic region of the spine to help correct the curvature, which was at greater than 70 degrees prior to the surgery, the father said. 

Chase can walk, but he cannot twist, turn or bend his back for at least three months.

The affliction was first diagnosed in the summer of 2015, during which Chase was outfitted with an external brace contained within a flak jacket (but much sturdier -- not quite as mobile to what NFL quarterbacks wear under their jerseys to protect against broken ribs or upper body muscle strains.

What is Adolescent Idiopathic scoliosis and can it be cured?

So what exactly is Adolescent Idiopathic scoliosis? It is an abnormal curvature of the spine that appears in late childhood or adolescence. Instead of growing straight, the spine develops a side-to-side curvature, usually in an elongated "S" or "C" shape; the bones of the spine are also slightly twisted or rotated. 

Medical conditions that affect the nerves and muscles, such as muscular dystrophy or cerebral palsy, can lead to scoliosis. These types of neuromuscular conditions can cause imbalance and weakness in the muscles that support the spine. Thankfully, Chase had neither condition.

Most of the time scoliosis does not cause pain in children or teens. When back pain is present with scoliosis, it may be because the curve in the spine is causing stress and pressure on the spinal discs, nerves, muscles, ligaments, or facet joints. It is not usually caused by the curve itself. 

Chase was not in pain prior to the surgery and has had very little or no pain since, his father said. 

Most scoliosis surgeons agree that children who have very severe curves (50 degrees and higher) will need surgery to lessen the curve and prevent it from getting worse, and when Chase crossed that threshold, it was determined that surgery was necessary to correct it, Nathan Johnson said he and his wife were informed by the surgeon who performed the operation on their son, Dr. Robert Stanton.

There is no known cure for scoliosis, though When a medical doctor diagnoses you with scoliosis, they will likely recommend one of the following courses of action:

flak jacket for spine curvature / Headline Surferspinal curvature correction  titatanium rods / Headline SurferWhen Chase Johnson was first diagnosed with Adolescent Idiopathic Scoliosis, he was outfitted with a flak jacket made of hard plastic. Then last month, he was fitted in surgery with a set of titanium rods and nearly two dozen screws to help correct his spinal curvature.

As noted by the Scoliosis SOS Clinic online, one must be careful when using the word "cure" in a medical context. There is a big difference between a "cure" and a 't"treatment"- the latter described as an effective treatment that might completely eliminate the symptoms of a disease, but if the underlying disease is still present then, strictly speaking, the patient has not been cured.

When a medical doctor diagnoses a child with scoliosis, they will likely recommend one of the following courses of action:

  • Bracing: Some scoliosis patients wear a back brace to halt the progression of their spinal curve. This is effectively a rigid plastic shell that prevents your back from changing shape any more than it already has. Sometimes the brace is only worn at night, but it is more common to keep it on around the clock (except when showering or bathing).
     
  • Surgery: Spinal fusion surgery is an operation that is commonly used to combat more severe spinal curves (Click here to read about this procedure and what it actually involves).

These were the steps Chase's parents undertook for his treatment. His lifespan is expected to be normal, his father said.

"Remember, none of these approaches - not even surgery - can 'cure' scoliosis as such,"  Scoliosis SOS Clinic states. "Rather, they aim to relieve the symptoms of scoliosis, straighten up the spine, and stop the curve from progressing any further."

Nathan Johnson said he and his wife are well aware there is no real cure and have explained it as best they can to their young son as has the surgeon, the father said.

Dealing with the new normal

Melody & Nathan Johnson with their kids / Headline SurferThe Johnson family of Deltona, Florida, in 2013, from left to right, Nathan, Melody, Chase, Nick and Shannon.

So how does Chase feel about the prognosis?

"He is ambivalent about it,"Nathan Johnson said. "He is happy to be taller and stronger and stand up straight. He is not quite use to having $45,000 worth of titanium in his back. The main issue is getting him comfortable in sitting and walking. He does get tired after some time. This is normal. Also, there is no neurological damage nor numbness as a result of the surgery."

So how are the parents doing after Chase's surgery?

"Melody and I doing well emotionally with this," said the father, Nathan Johnson, a former staffer to then-State Rep. Fred Costello, R-Ormond Beach, who challenged Congressman Ron DeSantis, R-St. Augustine in the 2016 GOP primary, and lost. "Chase has received about 25 cards, some gift baskets and quite a few meals. Some cards from people we have never met."

Chase Johnson, 13, after spinal curvature surgery with parents Nathan and Melody Johnson / Headline SurferMelody and Nathan Johnson with their son, Chase, after his surgery to correct spinal curvature.

Melody Johnson, recovering from a cold, added, "(Chase) will return the day after Labor Day and begin the STEM program at Galaxy Middle School. We praise God for such a great report. Once again, thank you (all) for all your prayers , thoughtful cards, gifts and kind words. We are blessed."

Chase is the youngest of three siblings Nathan and Melody Johnson adopted after accepting they could not have children of their own several years after they were married.

The oldest, Shannon, is 19 and she graduated Deltona High School in 2016. She works full time at Universal Studios full time. The middle child is Nick,17, who is a senior at Deltona High School. All three have consistently been honor roll students.

The children arrived in 2008, and were adopted by the Johnsons in 2013. Melody Johnson won election to the Volusia County School Board in 2014, for a four-year term. She was unanimously chosen as chair by her colleagues last year. 

Did You Know?

About 6 million people in the United States are affected by scoliosis. Out of those 6 million, many are celebrities who have lived with scoliosis. Here are a few:

Usain Bolt is known as the fastest man in the world, so it may be a shock to learn that he was born with scoliosis. Despite the setbacks scoliosis can cause, Bolt has won 9 Olympic gold medals.
Vanessa Williams was diagnosed with scoliosis during training to become a professional dancer. Her condition was so severe that she had to have a spinal fusion. She had to spend a year without regular physical activity. Vanessa Williams later went on to become the first African-American Miss America.
Liza Minnelli, famous Broadway performer and actress, had to dance in specific ways to avoid pain from her scoliosis. She also has false hips and had a knee replacement. She is now 70 years old and continues to perform.

 

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November 20, 2016