Julie's story

ankylosing spondylitis

By the time Julie was in her mid-30s, she had reached a point of no return. She gave up the dating scene because she felt "ugly." Her nickname was "Hot Mess." Doctors considered her untreatable.

Since early childhood Julie had suffered a condition called ankylosing spondylitis, a type of arthritis characterized by long-term inflammation and stiffness. It began as pain in her ankles and feet, then progressed to stiffness in her spine. In 2008, while living in Kentucky, she fell on the stairs and fractured a vertebra in her neck. After undergoing a fusion in Lexington, her chin began to curve downward toward her chest. And it stayed there.

"It was like having a bowling ball on my chest," Julie says. "It wasn't fun to do anything. It's not fun not having your head on your shoulders."

Two years later, her chin still anchored against her chest, Julie moved back to Ohio to live with her mother and with a mission to find help. Hunched over and unable to lift her head, she was routinely mistaken for someone in her 50s. "People say hurtful things," she says.

A primary care doctor ordered CT scans, and an orthopedic practice prescribed water therapy, land therapy, and epidural steroid injections. Three different surgeons in the Dayton area examined her and explained that the risks of operating outweighed the benefits.

"I had full use of everything, my hands and legs, and I could walk and talk and for the most part take care of myself," Julie says. "So they'd always say, why would we want to risk it? Then they'd add, 'But you're cute as a button and you have a great personality.' That makes you feel good, I guess, but cute can't help you."

Julie remained upbeat despite her disability and pain. Unexpectedly, while hanging out with the resident Shi Tzus and dachshund at her mother's pizza shop, Julie bonded with a man named Danny over their love of dogs. Danny didn't see her as "a hunchback, the way I saw myself or others saw me," Julie says.

It was Danny who persuaded her to follow through on a referral from a young physician assistant in Miamisburg who had heard about a Cincinnati practice that was producing remarkable results for patients with complex spinal deformity. With Julie's permission, the PA had sent Julie's chart to Mayfield Brain & Spine. After Julie's chart was passed from one Mayfield surgeon to another, however, Julie became discouraged and, fearing she would be told, "You're cute as a button, but nothing can be done," decided not to call for an appointment.

Danny persisted. "He said, 'Why would you not call back?'" Julie recalls. "So I started the process with Mayfield."

In December 2015, Julie took a seat in the office of Robert Bohinski, MD, PhD, a spine specialist with subspecialty skills in correcting complex spinal deformity. "I can fix you," he told Julie. "You're in bad shape, but I've seen patients in worse shape than you. We can do this. I need about 5 months to sit down with my team and draw out a plan."

With a mixture of hope tempered by disbelief, Julie underwent a new round of scans as well as pulmonary and bone testing to ensure that she was healthy enough to withstand the surgery. At the same time, Dr. Bohinski mapped out his plan to realign her cervical and thoracic spine from C –2 to T-5. Julie dubbed the procedure "the half and half."

A week before the procedure, while waiting to see Dr. Bohinski, Julie felt panicky. "What happens if I'm a vegetable?" she asked an assistant, Dianna. "You're not going to be a vegetable," Dianna answered. "Why would he offer to do something he doesn't think he can do? When you come here next year you won't recognize yourself. You'll be in new clothes."

When the day came – May 24, 2016 – Julie arrived at The Christ Hospital, still "scared to death." Dr. Bohinski's surgical team reassured her. "They said you are in a racecar, and we are your NASCAR team, your pit crew," Julie remembers. "You have The Christ Hospital and Dr. Bohinski and your own pit crew here to take care of you."

Over a period of 11 hours, Dr. Bohinski created a carefully designed surgical fracture called a pedicle subtraction osteotomy at the base of Julie's neck to re-align her spine so that her head could sit properly on her shoulders."

When it was over, Julie was 2¾ inches taller than she was before. She was in pain, which she expected, and she remained at The Christ Hospital for 4 days (1 in the ICU and 3 in the step-down unit). She spent three more days recovering at Atrium Medical Center, a rehabilitation facility in Middletown.

"By the time I had left Christ, things were a lot better," Julie remembers. "Walking was the best pain medicine. Getting up and moving and going around and talking to people. The technicians at Atrium loved it when they had me because I loved to walk. Once I was moving and walking, it was amazing. As soon as I could walk, I was a new person. They kept saying, where did you go for your surgery? The doctors came in and looked at me and they were just amazed."

Julie did get new clothes. And new shoes to dance in. She changed her hair color and bought new makeup so that people could see her face.

Julie calls Dr. Bohinski "my genius and my savior." She describes him not only as a gifted doctor but also one who smiles and laughs and talks to his patients. "He just goes along with me, someone who never had a degree or children," Julie says. "He says, 'You are you, just Julie. You don't have to have all the degrees and this and that. You're a success story and have taken advantage of what was in front of you.'"

In return, Dr. Bohinski and Mayfield have earned a friend for life.

"That place has made me a new person," Julie says. "I'm the poster child for Mayfield Brain & Spine. I honestly had almost given up to accept the way I was. When I go there I grab a handful of business cards. If I see someone in a neck brace, or if they're having back problems, I go up to them and say, 'You may not want to get online today, or tomorrow, but when you're ready to have a change, look these people up. You can have a second chance. Look at what Mayfield has done for me."

~ Cindy Starr

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