When Lizzie Clark was 13, she started hearing a strange noise in her left ear. At first she thought the tinnitus-like sound was a side effect of a cold. But the cold disappeared and the sound lingered, throbbing with her heartbeat.
For months, the “strange pulsing noise” was constant, Clark told CBS News. Her parents took her to her GP and then to an ear, nose and throat doctor, but it wasn’t until she underwent a CT scan that doctors finally discovered the cause. The eighth-grader was racing in a track meet when doctors called her parents and said they had seen a growth behind her eardrum.
“I was terrified. I was 13. I thought, ‘What growth? What does that mean?'” Clark recalled. “There were a lot of questions floating around.”
Clark was diagnosed with schwannoma of the facial nerve, a slow-growing benign tumor. The first doctor she saw recommended immediate surgery to remove the tumor, but told Clark and her parents that the surgery would damage her hearing and permanently paralyze the left side of her face.
Unsatisfied with that option, Clark and her parents sought a second opinion from Dr. Pablo Recinos, a neurosurgeon at the Cleveland Clinic. He recommended a more cautious route that would require careful supervision but could preserve Clark’s hearing and vision function.
Watch and wait
Recinos said that because facial nerve tumors tend to grow slowly, it may be possible to wait before operating. Clark was young and her tumor showed no signs of growth. He began working with reconstructive surgeon Dr. Patrick Byrne, the head of Cleveland Clinic’s Integrated Surgical Institute, on a series of complex surgeries that could treat Clark while minimizing risks.
First, Byrne would perform nerve graft surgery that would connect the nerves on the left side of Clark’s face to those on the right. This would rewire that side and keep Clark’s face functional, Recinos said. The nerve transplant surgeries would be followed by surgery to remove the tumor. It was a unique approach and Clark was the first patient for whom Recinos and Byrne developed the technique, Recinos said. They have since performed it on several other patients.
For years, Clark had an MRI every six months. During that time, the tinnitus-like sensation continued and a tube was placed in Clark’s ear to remove the fluid that had built up and could not drain naturally due to the growth. Otherwise, Clark experienced few symptoms. She even named the tumor “Teddy” so it was easier to “handle anything.”
When her photo was taken of herself during her freshman year of high school, Clark noticed that her smile was crooked and her face became asymmetrical. Soon after, she began experiencing mild facial paralysis. That brought Clark and her parents back to the Cleveland Clinic. Recinos and Byrne decided that these symptoms meant it was time to operate.
Clark underwent the first nerve transplant in 2021, followed by another surgery in early 2022. The procedures led to some improvement in Clark’s facial asymmetry and paralysis, which had become so severe that her left eye could not close properly. In December 2023, scans showed that the tumor had grown and was threatening to reach Clark’s brain stem. Postponing the removal operation was no longer an option.
‘I’m glad it’s over’
Despite the years of preparation, there was no guarantee that Clark would not lose hearing or facial movement function after the removal surgery. In fact, Clark said she was told she would likely lose hearing on her left side, due to where the surgery had to take place, and that she would wake up looking “dramatically different.” There were also concerns that she would have difficulty speaking as she recovered. It wasn’t all that different from the results she’d feared when she and her parents visited their first doctor years ago. Clark had hoped to wait until she finished college to have the surgery, but there was no more time to delay. She made arrangements to take the first semester of 2024 off and scheduled the surgery for August.
“I wasn’t scared, like at first. It was more of a calm relief that the tumor would be gone, that there wouldn’t be any more problems,” Clark said. “I was ready for the tumor to come out. I had accepted that I was going to use my hearing. I talked to my parents about possibly taking an ASL class. I knew it would be an adjustment, but everyone was excited that it was over.”
At 5 a.m. on August 8, 2024, Clark arrived at the Cleveland Clinic for the removal surgery. Clark was so scared that she didn’t sleep the night before, and her mother cried as her daughter was wheeled into the operating room. They knew the surgery would be long and difficult, and that Clark’s world would be different when she woke up.
Recinos said the 22-hour operation went smoothly. Neurotologist Dr. Anh Nguyen-Huynh operated around Clark’s ear and auditory structures to reach the tumor. Once there, Recinos severed Clark’s facial nerve and removed the tumor. Finally, Byrne reconstructed the area where the operation had taken place. Clark spent another eight hours sleeping from the effects of the anesthesia.
When Clark woke up, 30 hours after being wheeled into the operating room, the first thing she heard was her parents talking.
“I’m like, ‘That’s weird. I can hear them both out of both ears,'” Clark recalls. “I told them, ‘I can hear you.’ My mother said, “Is that the medicine talking? Or can she really hear us?” I’m like, ‘Yes, I can hear you guys.’ That was a feeling of relief.”
Regaining function and looking ahead
Although Clark was sleepy and in some pain, she had no trouble speaking. Her visual function was not limited, but even improved: a few days after the operation, she noticed that the left side of her mouth curved back to its natural position and that her eyelid closed better.
Recinos said the nerve grafts before the removal surgery led to the more successful outcome. The nerve graft had time to regenerate and settle in her face, he explained, allowing Clark to maintain facial function.
“It was a surprise to everyone that my face was working so well since they had just cut out my main facial nerve,” Clark said. “My face doesn’t look 100% like it did five years ago, but it’s better than the alternative.”
Clark now awaits his return to classes at the start of the spring semester. She is pursuing pre-pharmacy training, inspired by spending so much time with medical professionals. A pathology report revealed that Clark did not have a schwannoma, as she was initially told, but a meningioma. Both types of tumors grow slowly and can return, so Clark will be monitored regularly to make sure there is no new growth, Recinos said.
Clark said she hasn’t heard the ringing in her ear since she woke up after surgery. That disappeared when “Teddy” was removed, she said.
“Going to bed and hearing that whooshing sound, or when it was dead quiet and I could hear it, really annoyed me,” she said. “It’s very nice that it’s gone.”