Jackie and Steve Loutzenhiser share a happy moment on their last date night before his sudden diagnosis.
As a high school teacher and baseball coach, Steve Loutzenhiser is used to an active life, describing himself as “super healthy” and athletic.
So he was surprised when a sudden bout of back pain started to disrupt his life in the fall of 2024.
“I felt like I was getting stabbed in the back at night when I was trying to sleep,” Loutzenhiser, who lives in St. Peters, Missouri, tells TODAY.com.
“Incredibly sharp pain right between my shoulder blades in one specific spot.”
Loutzenhiser, 41 years old at the time, thought he hurt his back doing yard work, but when the pain persisted for several weeks, his chiropractor ordered an MRI.
The result was startling: The scan revealed a large tumor lurking inside his spine, not far from the base of his neck.
“It was lots of tears, lots of, ‘What does this mean?’” Jackie Loutzenhiser, 41, his wife, tells TODAY.com.
Health
“Never in a million years did either one of us think that it could have been a tumor,” Steve Loutzenhiser adds.
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He needed to undergo a battery of scans and tests to see if it was cancerous and how it threatened his health. One of the first neurosurgeons they saw painted a hopeless picture, telling the couple the tumor probably couldn’t be removed and would eventually result in paralysis.
Jackie Loutzenhiser was terrified about the future and the impact on the couple’s three kids, ages 14, 11 and 6. The youngest has since turned 7.
“I just kept thinking, I don’t know how we do this without him. This family does not work without him in it,” she recalls.
“It was a lot of very grim thoughts,” he adds.
Strange sneeze sensation was a symptom
In December 2024, the couple met with Dr. Camilo Molina, a Washington University neurosurgeon at the Siteman Cancer Center.
He told them the mass was an ependymoma, a benign tumor that filled the diameter of Loutzenhiser’s spinal cord.
These rare tumors generally don’t metastasize to other parts of the body, but are “locally aggressive” — meaning they'll continue to grow and push on the healthy parts of the spinal cord and progressively cause a patient to lose function, Molina says.
They strike about two to five people per million and can affect anyone, he adds.
“They are entirely random,” Molina tells TODAY.com.
“He’s young, healthy, athletic, conscientious. Never had a really a major health problem in his life, thinking that (he's) doing everything right. And then all of a sudden, something like this really completely disrupts your life in a somewhat catastrophic fashion.”
Early warning signs of ependymoma include numbness, tingling and clumsiness. Looking back, Loutzenhiser noticed the skin on the sides of his torso was starting to get numb.
People may also feel unsteady, like they’re going to fall when they close their eyes.
Another symptom is Lhermitte sign — a shock-like sensation through the body when the neck is bent forward. Loutzenhiser noticed that when he sneezed, he's get “an electrical burst” out to his elbows and knees.
It’s impossible to know whether the back pain Loutzenhiser felt was related to the tumor, but Molina suspects he had some muscle spasms and nerve pain in the vicinity of tumor, which was “fortunate” since it led him to get the MRI, the neurosurgeon notes.
Delicate surgery
Molina told Loutzenhiser he would slowly continue to lose sensation and balance as the tumor grew. If it got big enough, he’d eventually start losing strength, coordination and could become incontinent.
The options were to leave the tumor in and monitor it closely, or remove it right away in a surgery that came with some risks. Loutzenhiser wanted it out.
“I don’t think that I could have mentally been able to handle knowing that it was in there,” he says.
The delicate surgery took place on January 7.
With Loutzenhiser lying face down on the operating table and under general anesthesia, Molina made a small incision on his upper back directly over the tumor, dissected the muscles until he reached the bony part of the spine and opened the ring to his spinal canal.
Every tiny piece of the spinal cord has a critical function in the body in terms of balance, sensation, motor function and control of bodily functions, so Molina had to move carefully to remove the tumor.
The procedure was “almost like defusing a bomb in little, tiny pieces,” Molina says.
The neurosurgeon relies on a neural monitoring system during the surgery — little needles placed in Loutzenhiser’s head, arms, hands, legs and feet that send signals through his body to check if they’re getting through the spinal cord. If doctors are losing the signals as they’re working inside the spinal cord, they know they have to back off to avoid hurting the patient as they’re removing the mass.
“If you push it too much, they’re permanently paralyzed. But if you don’t push it enough, then you leave a big part of the tumor in there,” Molina says.
He was able to remove the whole tumor.
Relearning to walk
As soon as Loutzenhiser woke up after the surgery, he wiggled his feet to check if he still had movement in his legs. It worked.
“It was the best feeling I could have had at that moment,” he recalls.
“He was moving everything, and it was just the biggest weight off my shoulders,” his wife adds.
It took about a month for Loutzenhiser’s legs to be fully functional again to the point he could walk on his own. Patients undergoing such spinal surgery have a temporary loss of coordination and need to retrain their brain, legs and trunk, Molina says.
“My feet felt like they were balloons,” Loutzenhiser recalls. “My motors were working, but my sensors weren’t.”
Today, he can walk, squat and go up and down the stairs, but he’s not cleared to run or jump for now. A big milestone was being able to snuggle with his daughter before she goes to sleep — something he couldn’t do since before his surgery.
Loutzenhiser is back to work on a part time basis at Fort Zumwalt East High School, where he was recently named Educator of the Year.
He’s thankful for all the doctors, nurses, therapists and residents who treated him during the ordeal.
“It’s been like a decade worth of experiences in four months,” he says.
This story first appeared on TODAY.com. More from TODAY:
