Symptoms

Lauren Casey, then 15, was a tenor sax player in her Minnesota high school marching band when the pain in her hip and lower back first became severe. It hurt when she walked and when she stood for hours at her fast-food job. Soon, she began feeling like her ribs were popping out of place.

Casey thought maybe carrying around her 10-pound instrument, much of its weight on her neck, was the problem. "It was heavy for someone tiny," she said.

Casey's parents took her to a string of doctors during her teenage years — internists, an osteopath, a physical therapist — but none could figure out what ailed her. One said her problem was a "twisted pelvis." Another, she said, suggested "it was just in my head… It was doctor after doctor shutting me down," said Casey, now 24.

In college, Casey sought alternative treatments, including one focused on manipulating her musculoskeletal system, but she said the pain always returned. After more than eight years of seeking help from several medical professionals who failed to identify what was wrong with her, she essentially gave up. Casey concentrated on her studies and decided to "tough out" the near-constant pain.

"The pain definitely slowed me down and made things hard to enjoy," Casey said. "But I kept pushing through it."

Soon, Casey's family moved to the Chicago area, and her father urged her to try a new physician. She made an appointment with a chiropractor who ordered X-rays and an MRI of her entire spine and neck — something no previous doctor had requested. What appeared on those images was so unusual that the chiropractor quickly referred Casey to a neurosurgeon. That, she said, began the fraught path to solving her years-long pain.

"I lived for 22 years not knowing what this was," she said. "But I'm glad someone found out what was wrong … I just didn't realize it would be such a big deal."

"I'd never seen this in a patient before," Spencley said. "I had her come in so we could go over the results and get her the care she needed."

In October 2023, Casey met with Russ Nockels, a neurosurgeon and chief of spine surgery at Endeavor Health Northwest Community Hospital in Arlington Heights, Illinois. Nockels explained that Casey's pain was the result of a rare, congenital condition called basilar invagination.

Casey's doctors developed a plan: Create a slot at the bottom of her skull, and instead of taking out the peg, move it forward into the slot. This allowed them to dis-impale her spinal cord and brain stem, then, with X-ray guidance, the doctors could slowly let her head extend and tilt backward to its natural position.

In January 2024, Casey underwent the first of her multistage operations. Kassan said that to his knowledge, Casey was "the first person to undergo this procedure," in which the head was returned to its correct position without removing the odontoid peg.

Casey endured an arduous recovery. The halo remained on for about a month, then she wore a series of hard and soft collars around her neck. At first, she had to sleep sitting up in a chair. Swallowing was difficult, and she required help from her parents.

"There was lots and lots of soup," Casey said. Now, her hip pain is gone, and she has started walking regularly. She took a vacation to Las Vegas this summer and said she was amazed by "seven straight days of no pain."

Now, she can do what she wants, so long as it's not jet-skiing or another similarly intense activity. "I'm lucky it turned out the way it did," she said. "... I feel like I can live my life."