When Brenda Anderson, a 38-year-old marketing manager and single mom of two boys, woke up one morning in July 2018, she couldn't hear well in one ear. It felt like she needed to pop her ear after getting off an airplane. But two days later, when the feeling still hadn't gone away, she became worried that something was more seriously wrong and decided to call a local otolaryngologist (ear, nose, and throat doctor).
Brenda was initially treated for a viral infection, but after several weeks, that hadn't helped. Doctors knew it was a problem with her nerve but couldn't figure out what was going on, so her otolaryngologist (ENT) ordered an MRI brain scan. That was on a Monday, and when they called her first thing the following morning asking her to come back in, she knew it probably wasn't good news.
"They said, 'You do have a tumor," Brenda said. "'It's quite large, comparable to the size of a golf ball,' at around 4.5 cm." Her mind was racing with a mixture of shock, disbelief, worry, and fear. The otolaryngologist (ENT) immediately referred her to Dr. Richard Gurgel, an ear and skull base specialist and surgeon in the Division of Otolaryngology at University of Utah Health.
Brenda was diagnosed with a vestibular schwannoma, a type of tumor that grows on the hearing and balance nerve between the ear and the brain. The most common symptoms of these tumors are hearing loss on one side and balance issues, such as dizziness or unsteadiness.
Brenda's tumor had grown so large that it was putting pressure on her brain stem, causing almost total hearing loss in her left ear. Fortunately, the tumor was benign, which is the case for most vestibular schwannomas, which also usually grow very slowly. But she would need to have surgery to remove it before it grew large enough to cause damage. Left untreated for a long period of time, it could even be deadly.
"A small percentage of [vestibular schwannomas] are related to a genetic syndrome, but most of the ones we see and treat are what we call 'sporadic' tumors," said Dr. William Couldwell, chair of the Department of Neurosurgery at U of U Health. He specializes in skull base surgery to remove brain tumors and operated on Brenda. "The sporadic ones are usually unilateral—one side—and they don't have a known genetic predisposition. We don't think it's related to anything in the environment. We just don't know [what causes them]."
Drs. Gurgel and Couldwell were both surprised Brenda could go so long with such a large tumor and have no symptoms prior to the hearing loss: no migraines, balance issues, or facial twinges. They scheduled surgery to remove it immediately.
As Brenda prepared for the eight-hour brain surgery, there were a lot of unknowns, including the potential long-term effects. Since vestibular schwannomas are so close to the facial nerve, any surgery to remove the tumors runs a risk of causing damage. If that happened, Brenda could have facial weakness or even permanent paralysis like visible sagging or drooping on one side of her face for the rest of her life.
"I was emotional," she said. "There's no way you can prepare for this kind of thing." One day you're fine and the next your life is upside down. You have moments when you're scared and moments when you're feeling really brave."
She worried about caring for her kids, shaving her long hair for the surgery, whether the tumor was cancerous, and, most of all, whether she would have temporary or permanent facial paralysis. She was fortunate to have plenty of support from friends and family, including her mom, who moved in to help her recover for two months, and her ex-husband, who could care for the kids.
During the procedure, Dr. Gurgel and his team exposed the tumor by drilling through the temporal bone next to the ear. Next, Dr. Couldwell and his team went in and carefully removed the tumor in small sections over several hours. Finally, Dr. Gurgel came back in to fill the area where the tumor was removed with fatty tissue from Brenda's belly and stitch her up. Because of the tumor size, doctors could not preserve her hearing, so she is completely (and permanently) deaf in the left ear. But hearing in her right ear is still normal.
As is the case for most patients, immediately after surgery, Brenda experienced facial paralysis. She couldn't smile or control one side of her mouth, chewing was difficult, and she didn't have full control over her eyelid, so her left eye was always partially open.
"That was absolutely the worst part of recovery," she said. Despite near-constant eyedrop applications and an eye patch that traps moisture, her eye was always itchy and dry, and she had to tape it shut while she slept. Her eyes also wouldn't track at the same pace, which made it impossible to watch television or read while she was healing. So she slept a lot and visited with friends and family.
"We knew there would be at least temporary facial paralysis, so that wasn't a surprise to me," Brenda said. "The hardest part about it is that you don't know how long it will last. Sometimes the facial nerve heals, and sometimes it does not, and that's a scary thing to live with."
The hearing loss is a challenge and something she is adapting to. She has burned pizza because she couldn't hear the timer and slept through alarms when her good ear was against the pillow. Environments with ambient noise make it hard to hear, and she no longer has a sense of directional sound. Overall, though, Brenda is recovering well and has regained "about 90 to 95 percent" control in her facial nerve. She said the remaining weakness is barely noticeable unless she points it out. She also feels lucky to have such great care nearby.
"People from the whole region will travel to see Dr. Gurgel or Dr. Couldwell, and they are 15 miles away from me," she said. "I feel pretty blessed. It's significant to have such amazing medical experts and facilities so close. I'm grateful these doctors have dedicated their lives to help patients like me."
Brenda has also been relying on her faith as a source of strength through the entire process, reminding herself that the journey is where we grow. "You have a choice when you get diagnosed with something like this," she said. "You can choose to let it defeat you and be scared, or you can be confident in the medical care and confident in yourself that you can overcome this."