Surgeons Remove Rare Tumors Causing Teen’s Severe Nerve Pain

While on a cruise with her grandmother, 17-year-old high school student, Lorelei, noticed an odd tingling sensation in her fingers. The sensations came out of nowhere and continued when she returned from vacation while at school.

“I would have tingling pains that would go down my whole arm, hand and fingers, and that’s why I noticed it so much,” she said. “It was so uncomfortable.”

Lorelei started to notice other symptoms that were concerning: “It was really painful to carry my backpack, but I thought that could just be from carrying a lot of books or maybe I slept wrong. But then I started losing weight too.”

Lorelei visited her primary care provider and many specialists in the area to try to figure out what was wrong. Lorelei’s family eventually made a visit to the emergency department at UH Rainbow Babies & Children’s Hospital when the pain got to be unbearable. She was referred to the UH Neurological Institute where a CT, MRI and ultrasound were performed.

Rare Tumor Found; Another Tumor Discovered 6 Months Later

A tissue-guided biopsy showed she had a tumor that needed to be removed – a non-cancerous, rare growth within the nerves that connects the spine to the shoulder and arm called a brachial plexus tumor. The tumor was the size of baseball.

Stanley F. Bazarek, MD, PhD, attending neurosurgeon at UH Cleveland Medical Center and co-director of the UH Peripheral Nerve Surgery Center, along with his fellow, Eric Herring, MD, were able to successfully remove the tumor with a small incision in her armpit; however, she was back within about six months due to additional pain in her back.

Following additional testing, Dr. Bazarek discovered the pain was being caused by a tumor inside of her cervical spinal cord, and worked again with Dr. Herring and one of his neurosurgery partners, Michael Staudt, MD, to remove it with a second successful surgery.

“The cervical spinal cord carries most signals from the brain to the rest of the body and is not much larger than a centimeter thick, so this is a very delicate surgery. Removal of tumors within the cervical spinal cord may result in serious neurological deficits, such as paralysis, loss of sensation or severe pain syndromes,” Dr. Bazarek said. “Lorelei woke from surgery with full strength and some initial altered sensory perception, as we had to pass through the sensory region of the spinal cord to access her tumor. Our team is pleased that the surgery was successful and that Lorelei is doing so well now.”

Dr. Bazarek explained that Lorelei has a sporadic form of a genetic condition called NF2-related schwannomatosis type 2, which causes tumors to develop throughout the nervous system, on peripheral nerves, spinal cord and the brain.

The Road to Recovery

Lorelei was in good spirits following the second surgery, but it was still a tough recovery.

“I had to relearn how to walk, take care of myself by bathing, brushing my teeth, and my recovery took about six days,” she said. I did some rehabilitation while at the hospital and on the third or fourth day I was able to walk with a walker and reach some small goals.”

Now, Lorelei is back to feeling like her best self and is grateful for Dr. Bazarek, his team and the care she received. She has gone back to playing soccer and to Model UN, where she is in a leadership role as council president.

Her father, Chris, said, “This is not a final victory celebration. Every battle is its own war, you just deal with the one that’s in front of you. However, I think it’s really important to share Lorelei’s story. People should know about these successes in case they’re dealing with a similar situation themselves or with a loved one. She is back to 100 percent with just some numbness in her foot here and there. We are glad we live in a place like Cleveland, which is an amazing healthcare hub.”

Chris says that Lorelei’s attitude and her fight are what truly made her recovery a success.

“She hasn’t dropped the ball in school or with any of her extracurricular activities, even after going through all of this so suddenly. It’s really impressive,” he said.

This experience has made Lorelei very interested in medicine, and she is now shadowing Dr. Bazarek in his nerve clinic while learning more about the field.