When Lizzie Clark was 13, she began experiencing a strange ringing in her left ear. At first, he thought the tinnitus-like sound was a side effect of a cold. But the cold left and the sound lingered, beating with the beat of his heart.
For months, the “strange dusting noise” was constant, Clark told CBS News. Her parents took her to see her primary care doctor, then an ear, nose and throat doctor, but it wasn’t until she underwent a CT scan that doctors finally found the cause. The eighth-grader was competing in a track meet when doctors called her parents and told her they had seen a growth behind her eardrum.
“I was terrified. I was 13. I said, ‘What growth? What does that mean?'” Clark recalled. “There were a lot of questions floating around.”
Clark was diagnosed with a facial nerve schwannoma, a slow-growing benign tumor. The first doctor he saw recommended immediate surgery to resect the tumor, but told Clark and his parents that the operation would damage his ear and permanently paralyze the left side of his face.
Courtesy of Lizzie Clark
Unsatisfied with that option, Clark and his parents sought a second opinion from Dr. Pablo Recinos, a neurosurgeon at the Cleveland Clinic. He advised a more cautious route that would require careful monitoring but could preserve Clark’s hearing and facial function.
Watching and waiting
Recinos said that because facial nerve tumors tend to be slow-growing, it is possible to wait before surgery. Clark was young and his tumor showed no signs of growth. He began working with reconstructive surgeon Dr. Patrick Byrne, the head of the Cleveland Clinic’s Integrated Surgical Institute, in a series of complex operations that could treat Clark while minimizing risk.
First, Byrne would perform nerve graft surgeries that would connect the nerves on the left side of Clark’s face to those on the right side. That would reconnect that side and keep Clark’s face functional, Recinos said. The nerve graft surgeries would be followed by surgery to remove the tumor. It was a unique approach, and Clark was the first patient on which Recinos and Byrne developed the technique, Recinos said. Since then it has been performed on several other patients.
For several years, Clark had an MRI every six months. During this time, the tinnitus continued and a tube was placed in Clark’s ear to clear the fluid that was building up and couldn’t drain naturally due to the growth. Otherwise, Clark experienced few symptoms. He even named the tumor, calling it “Teddy,” so it was easier to “deal with everything.”
When her picture was taken during her freshman year of high school, Clark noticed that her smile was crooked and her face became asymmetrical. Shortly thereafter, he began to experience mild facial paralysis. That brought Clark and his parents to the Cleveland Clinic. Recinos and Byrne decided that these symptoms meant it was time to begin surgery.
Courtesy of Lizzie Clark
Clark had the first nerve graft surgery in 2021, followed by another operation in early 2022. The procedures led to some improvement in Clark’s facial asymmetry and paralysis, which had become so severe that the 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. Delaying removal surgery was no longer an option.
“Exciting that it’s over”
Despite years of preparation, there was no guarantee that Clark wouldn’t lose some hearing or facial movement function after the removal surgery. In fact, Clark said she was told she would likely lose her hearing on the left side, because of where the operation was to be done, and that she would wake up looking “drastically different.” There were also concerns that he would have trouble speaking as he recovered. It wasn’t so different from the results she had feared when she and her parents saw their first doctor years earlier. Clark had hoped to wait until after college to have the operation, but there was no time to delay. He made arrangements to be removed in the first half of 2024 and scheduled the surgery for August.
Courtesy of Lizzie Clark
“I wasn’t scared, like I was in the beginning. It was more like a quiet relief that the tumor was gone, that there wouldn’t be any more problems,” Clark said. “I was ready for the tumor to come out. I had come to terms with the fact that I was going to lose my hearing. I was talking to my parents about possibly taking an ASL class. I knew it would be an adjustment, but everyone was excited for it to be over.” .
At 5 a.m. on August 8, 2024, Clark arrived at the Cleveland Clinic for removal surgery. Clark was so scared she hadn’t slept the night before, and her mother cried as her daughter was wheeled into the operating room. They knew the operation would be long and arduous, and that Clark’s world would look different when he woke up.
Recinos said the 22-hour operation went well. The neurologist Dr. Anh Nguyen-Huynh operated around Clark’s ear and auditory structures to reach the tumor. Once there, Recinos cut Clark’s facial nerve and removed the tumor. Finally, Byrne reconstructed the area where the surgery had taken place. Clark spent another eight hours sleeping off the effects of the anesthesia.
When Clark woke up, 30 hours after being wheeled into surgery, the first thing she heard was her parents talking.
“I’m like ‘That’s weird. I can hear both of them with my ears,'” Clark recalled. “I told them, ‘I can hear you.’ My mom said, ‘Is that the medicine talking or is it really listening to us?’ I said, ‘Yes, I can hear you.’ It was such a relief.”
Reclaiming function and looking ahead
Although Clark was asleep and in some pain, she had no difficulty speaking. Her facial function was not limited, but was actually improving: a few days after the operation, she noticed that the left side of her mouth was curving back to its natural position and her eyelid was closing better.
Recinos said nerve grafts prior to removal surgery led to the most successful outcome. The nerve graft had time to regenerate and resettle in his face, he explained, allowing Clark to maintain facial function.
“It was a surprise to everyone that my face worked as well as it did, considering I only had the main facial nerve cut,” Clark said. “My face doesn’t look 100% like it did five years ago, but it’s better than the alternative.”
Courtesy of Lizzie Clark
Clark is now looking forward to returning to classes at the start of the spring semester. She is in pre-pharmacy school, inspired by spending so much time with medical professionals. A pathology report found that Clark did not have a schwannoma as he was initially told, but a meningioma. Both types of tumors are slow-growing and can recur, so Clark will have regular follow-up to make sure there is no new growth, Recinos said.
Clark said he hasn’t heard the ringing in his ear since he woke up from the operation. That left when “Teddy” was removed, he said.
“Going to bed and hearing that noise, or when I was really quiet and could hear it, it really bothered me,” he said. “It’s really nice that it’s gone.”