There are few things that 15-year-old Ruby loves more than volleyball.

From the intensity of the game to the teamwork to the thrill of tournament play, Ruby is all in every time she steps out on the court. 

But last summer, her love for the sport was interrupted by a medical issue that no one could have anticipated. During a tournament in June, Ruby found herself struggling with a severe backache. 

“It started hurting really bad — to a point where I was crying,” Ruby says. “I didn’t know what was wrong.” 

A fit and able athlete, had she somehow strained her back? Suffered a different injury? 

Unable to compete at her best, Ruby stopped playing and took a couple of weeks away from the game to rest. Meanwhile, she had also begun to experience frequent, severe headaches. One day in August, while running her hands under water, she realized she couldn’t feel the water’s temperature as she normally would. Ruby was losing the sensation of hot and cold. 

Her parents were becoming increasingly worried.

If it was an injury of some sort, it didn’t seem to be healing. A consultation with her doctor, even a round of X-rays, yielded no explanation. 

What was happening to Ruby? 

Finally, a visit with a chiropractor who was a family friend would begin to unravel the mystery.

An MRI (imaging scan) was ordered for Ruby — and the results were telling.

Mystery Solved 

Images of the base of Ruby’s brain and her spine showed abnormal results, including a cyst along the length of her spinal cord.

From here, things began to move quickly. 

The scan was immediately sent to Ruby’s doctor, who assisted in scheduling an appointment with Hassan Akbari, M.D., an experienced pediatric neurosurgeon with the Hough Family Institute for Brain Protection Sciences at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. 

But the day before her appointment, while taking a shower, Ruby noticed with growing alarm that the loss of hot and cold sensation was getting progressively worse. 

“It was starting to move up her arm,” says her mom, Katrina. “We were starting to get really concerned.” 

Ruby was rushed to Johns Hopkins All Children’s Emergency Center, where the family met with Akbari. The doctor confirmed the diagnosis: Ruby had a structural abnormality called a Chiari malformation type 1. 

A Chiari malformation occurs when a portion of the cerebellum, the lower part of the brain, bulges through a small opening in the skull where it joins the spinal canal. The resulting pressure on the brain stem and spinal cord can cause a range of problems. While many people who have Chiari malformation have no symptoms and may not even realize they have it, in some cases it can lead to headaches, progressive loss of sensation, permanent damage to muscles or nerves, curvature of the spine, even paralysis. 

In Ruby’s case, a large syrinx — a pocket of fluid that had built up along her spine — had formed as a result. 

When Akbari looked at Ruby’s scan, he knew almost immediately that he would recommend surgical intervention. 

“The scan was pretty remarkable,” Akbari says. “The size of the syrinx was one of the largest I’ve seen. It was putting a lot of pressure on her spinal cord and nerves.” 

Hearing that Ruby needed brain surgery was daunting news for her family.

“We were about to lose our minds with fear at that point,” says Ruby’s dad, Steve. “But Dr. Akbari took time with us, and he was a very comforting person, a calming influence.” 

After considering all options, the family made the decision to move forward with the surgery for Ruby. 

“I just sensed that it would be fine,” Ruby says. “I knew Dr. Akbari was a good doctor.” 

Surgery

On Sept. 30, 2024, Akbari and his skilled neurosurgical team performed a procedure on Ruby called a Chiari decompression. 

“To help Ruby, we wanted to increase the amount of space that the brain tissue and spinal cord have,” Akbari says. 

To do that, Akbari removed a small portion of the back part of the bottom of the skull. He also removed the back portion of the first cervical spine vertebrae. Finally, he opened up the dura (leathery covering around the brain), and sewed in a small patch to provide even more space and stability. 

Often with Chiari decompression surgeries, the syrinx is not directly treated, but may be improved over time as a result of the decompression. With time and healing, Ruby would know just how much improvement she would receive. 

The surgery went smoothly, and Ruby surprised everyone with her toughness. 

“We were prepared for a long recovery, but she just powered through it,” her mom says. 

Ruby was discharged from the hospital a few days after her surgery, and she returned to school within about a week after that. During those first 30 days, Ruby experienced some headaches and tenderness. She slept a lot.

But gradually, she became stronger and more active. Her headaches were less frequent. Her loss of sensation was beginning to improve. She was feeling so much better. 

Over the course of her recovery, she worked hard to successfully regain the high grade-point average that she had lost during her illness. More than anything, she longed to be back on the volleyball court, winning games with her teammates. 

Milestones 

In December, Ruby received some amazing news. An MRI scan showed that the outsized cyst that had taken up residence along her spine had shrunk dramatically — a reduction in size of about 80 percent. It was an impressive marker of recovery. 

Then in January, the best news of all — the high school freshman returned to play volleyball. 

“Ruby is an incredibly strong girl,” Akbari says. “She’s getting back to where her life was before all of this began, and that is awesome.” 

For her parents, seeing their daughter rebound from such a frightening medical setback makes them proud and grateful. 

“It makes me realize there are amazing people in the world,” Steve says. “People like Dr. Akbari and his staff, and all the nurses. When you have somebody who means so much to you and then these people who don’t even know Ruby … we felt like she meant so much to them as well. They were wonderful.” 

For Ruby, the experience offered perspective that is sure to help shape her future. 

“The experience helped me to realize that there’s more to life than just sports stuff,” Ruby says. “There is more that I can do. And I’m very lucky.”