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Doctors discover Chicago-area woman’s mysterious pain linked to rare disease
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Doctors discover Chicago-area woman’s mysterious pain linked to rare disease

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

One Fox 32 special reportSylvia Perez has the story of what makes a team northwest suburban surgeons solved the mystery for one local woman and created a new medical breakthrough for others.

“I’ve had a lot of hip and rib issues since I was a little 15-years-old,” Lauren Casey said. “I went to doctor after doctor and no one could really find anything wrong.”

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

“I loved being in the military. I played the tenor saxophone. So I was like a little skinny girl playing this big instrument,” Casey said. “I made it through because everyone told me nothing was wrong and nothing was helping. So what am I supposed to do?”

As time went on, the pain began to move from Casey’s hip to his ribs.

Until last year, his then-chiropractor hadn’t made any major progress in finding out where his pain was coming from.

“He took an X-ray of my neck and my whole body, but he saw that there was something wrong with my neck,” he said.

Casey says that until then, his doctors had only taken the X-ray of his neck, not his neck, because that’s where he felt the pain.

He also says he doesn’t experience neck pain or headaches, despite how his neck looks on an x-ray.

Dr. “If someone had manipulated that neck, he would have been on a ventilator, unable to speak or move his arms and legs,” Amin Kassam said.

Dr. “Lauren is a lovely young woman who has a very rare condition called basilar intussusception,” added Russ Nockels.

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

“The spine can start to push through the opening in the skull where the spinal cord is located, and that’s a very dangerous situation,” Nockels said.

“I look at it as Chicago traffic. This is 94. It’s a six-lane highway. Two lanes are open. The other four lanes are closed,” Kassam said.

As a result of this compression, doctors said that the 23-year-old software engineer had the spine of a 60-year-old woman.

The curve in Casey’s neck since birth also made it difficult for Casey to look straight ahead.

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

“If you create an environment that allows people to challenge each other, it actually becomes relatively easy to understand,” Kassam said.

Physicians representing eight surgical specialties and 18 subspecialties make up a group known as Endeavor’s tumor board. They meet regularly to develop care plans for patients with complex neurological conditions.

A new, pioneering surgical approach emerged from analysis of Casey’s case. It is based on an existing technique created by one of his surgeons.

“The first time I went through the nose to remove this piece of bone instead of the mouth was in the early 2000s,” Kassam said.

But this time, doctors did not want to remove the vertebrae at the top of Casey’s cervical spine. They just want to fix it and keep it that way so that its spinal cord doesn’t get compressed again.

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

By entering through the nose, there was no need to make any incisions in the mouth or pull out the tongue.

“Since you haven’t disturbed any of these, he can eat right away. His tongue is not swollen,” Kassam said. “He can follow a normal diet. He can stand up. He can talk.”

After gaining access to his spine, they moved and stabilized the misaligned bone with several metal screws.

Dr. “It was really striking. It looked like part of his spine was pressing on his spinal cord,” Melanie Fukui said.

Fukui is the neuro-radiologist who assisted in Casey’s surgery. He is like a flight navigator; guides surgeons from one step to the next in the operating room.

“Overall it was a very unusual case and a really innovative solution that really worked for him. I think it was a great outcome all around,” Fukui said.

“I think their confidence is what made me so confident that everything was going to be okay,” Casey added.

Despite an intense recovery from surgery, which included being intubated and wearing different halo devices to keep his neck immobilized for two months, Casey says he feels great now.

“Everything is fine. I’m ready to go. I don’t need to see them or visit back or anything,” he said. “Overall it was a really good experience. I couldn’t have asked for better people.”

His doctors hope Casey’s good experience will mean a good experience for other patients in the future.

Dr. “I believe there are a lot of people around in his age group with similar conditions,” Kassam said. “I think people will be much more aware of this and will be able to direct them to the right places for care.”

Dr. “The real, unique aspect of this is that we can do something for it that is very minimally invasive but maximally effective,” Nockels said.

To perform Casey’s surgery, his doctors had to do it in two parts with a three-day break in between. Both pieces took ten hours to complete, involving approximately four different surgical teams.