Introduction to a Life-Changing 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.”
The Discovery of a Tumor
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.
An arrow points to the large tumor in Loutzenhiser’s spine, near the base of his neck. Courtesy WashU Medicine
Initial Reactions and Further Diagnosis
“It was lots of tears, lots of, ‘What does this mean?’” Jackie Loutzenhiser, 41, his wife, tells TODAY.com. “Never in a million years did either one of us think that it could have been a tumor,” Steve Loutzenhiser adds. 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.
Understanding the Tumor
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.
Symptoms of Ependymoma
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 got “an electrical burst” out to his elbows and knees.
The 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 Procedure
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.
Recovery and Rehabilitation
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. 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.
Current Status
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.
Conclusion
Loutzenhiser’s journey is a testament to the importance of seeking medical attention for persistent pain and the advancements in medical science that make surgeries like his possible. His story also highlights the resilience of the human spirit in the face of adversity. Loutzenhiser is 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.
FAQs
- What is an ependymoma? An ependymoma is a type of tumor that can form in the brain or spinal cord. It is usually benign but can be locally aggressive.
- What are the symptoms of ependymoma? Early symptoms include numbness, tingling, clumsiness, and a shock-like sensation when bending the neck forward.
- How is ependymoma treated? Treatment typically involves surgery to remove the tumor. The success of the surgery depends on the location and size of the tumor.
- What is the prognosis for someone with ependymoma? The prognosis varies depending on the tumor’s location, size, and whether it can be completely removed. Generally, if the tumor is fully removed, the outcome can be favorable.
- Can ependymoma be prevented? Since ependymoma is a rare and usually random occurrence, there are no known preventive measures. Early detection through medical check-ups is crucial for effective treatment.
