Chicago-area woman's mystery pain linked to rare disorder, doctors discover

CHICAGO - Many of us live with some form of constant pain that we don’t really know why or where it’s coming from.

In a Fox 32 special report, Sylvia Perez has the story of how a team of northwest suburban surgeons solved that mystery for one local woman and made a new medical breakthrough for others.

"Since I was younger, 15 or so, I’ve had a lot of hip and rib issues," said Lauren Casey. "I’d been to doctor after doctor and nobody really found out anything that was wrong."

Casey is now in her 20s and says she first felt that pain when she was in high school.

"I loved being in the marching band. I played tenor saxophone. So I was like this little skinny girl, playing this big instrument," Casey said. "I just pushed through because everyone is telling me nothing is wrong and nothing is helping. So what am I supposed to do?"

As time went on, the pain pushed from Casey’s hip to her rib.

It wasn’t until last year that her chiropractor at the time made a big breakthrough in finding out where her pain was coming from.

"He did an X-ray of my neck, full body, but he saw something was wrong with my neck," she said.

Until then, Casey says her doctors had only taken X-rays from her neck down and not the neck up, because that’s where she felt her pain.

She also says she didn’t have any neck pain or headaches despite what her neck looked like on the X-ray.

"If somebody had manipulated that neck, she’d be on a ventilator unable to speak, move her arms and legs for the rest of her life," said Dr. Amin Kassam.

"Lauren is a very nice young woman who had a very rare disorder. The name for it is basilar invagination," added Dr. Russ Nockels.

Doctors Nockels and Kassam are neurosurgeons at Endeavor Health Neurosciences Institute’s Advanced Neurosciences Center in Arlington Heights.

"What can happen is the spine can start to go through the opening in the skull where the spinal cord is, and it’s a very dangerous situation," Nockels said.

"I look at this as Chicago traffic. That’s 94. She’s got a six-lane highway. She’s got two lanes open. The other four lanes are shut down," Kassam said.

As a result of that compression, doctors told the 23-year-old software engineer she has the spine of a 60-year-old woman.

Since birth, that curve in her neck also made it difficult for Casey to simply look straight ahead.

Now, for the other part of the mystery, is how to treat this rare condition.

"If you create an environment that allows people to challenge one another, it actually becomes relatively straightforward to figure out," Kassam said.

Doctors representing eight surgical specialties and 18 sub-specialties make up a group that's known as Endeavor's tumor board. They meet regularly to develop care plans for patients with complex neurological conditions.

From their analysis of Casey’s case came a new pioneering surgical approach. It’s based off an existing technique created by one of her surgeons.

"The first time I went through the nose to take out and remove this piece of bone, as opposed to the mouth, was in the early 2000s," Kassam said.

Except this time, doctors didn’t want to remove vertebrae at the top of Casey’s cervical spine. They just want to straighten it out and keep it that way so her spinal cord won’t be compressed again.

Fox 32 met with Dr. Nockels and Kassam in the operating room where they performed this pioneering technique on Casey back in January.

By going in through the nose, they did not have to make any incisions in her mouth or pull on her tongue.

"She can eat right away because you didn’t disrupt any of this. Her tongue is not swollen," Kassam said. "She can have a normal diet. She can get up. She can talk."

Once they were able to access her spine, they moved and stabilized the misaligned bone with a few metal screws.

"It was really very striking. It looked as though part of her spine was impaling her spinal cord," said Dr. Melanie Fukui.

Fukui is the neuro-radiologist who assisted with Casey’s surgery. She is like a flight navigator, guiding surgeons from one step to the next in the operating room.

"It was just a very unusual case in general and it was a really innovative solution that worked really well for her. I think it was a great result all around," Fukui said.

"Their confidence in themselves, I think, is what made me so sure that it was going to go fine," Casey added.

Despite an intense recovery from surgery that included being intubated and wearing different halo devices to immobilize her neck for two months, Casey says she now feels great.

"Everything is in the green. I’m good to go. I don’t need to see them or visit back or anything," she said. "It was a really good experience overall. I could not have asked for better people."

Her doctors are hoping Casey’s good experience will also mean a good experience for other patients in the future.

"I believe there’s a lot of people walking around in her age group with similar-like conditions," Dr. Kassam said. "I think people are going to be much more aware of it and be able to point them to the right places for care."

"The real, unique aspect of this is we were able to do something that was very minimally invasive but maximally effective for her," said Dr. Nockels.

To perform Casey’s surgery, her doctors had to do it in two parts, with a three-day break in between. Combined, both parts took ten hours with about four different surgical teams to complete it.