Melissa's Story

Melissa Drake is the kind of woman who makes life look easy. A 40-year-old mom of three, she never seems to run short on energy.

Whenever there’s a school function, Melissa’s among the first to volunteer. She also runs the family’s small farm and still somehow manages to hit the gym five or six times a week.

In hindsight, though, being in perpetual motion may have allowed Melissa to downplay the numbness in her face and neck.

“I assumed it was a dental problem or pinched nerve,” she says.

So, Melissa plugged on until she couldn’t. By last October, the numbness had become so pervasive that she saw her family doctor, who sent her to get an MRI. The results came a couple days later: Melissa had a brain tumor.

Trust is a valuable thing

 

A neurosurgeon at her local hospital referred her to John Y. K. Lee, MD, MSCE, a neurosurgeon and the medical director of the Penn Medicine Gamma Knife Center. Melissa and her husband, an emergency department doctor, met with Dr. Lee on October 31. As he displayed her MRI scans, Melissa’s husband could tell what they indicated and began to well up.

 

Melissa had an acoustic neuroma, a noncancerous tumor that develops on the balance nerves that run from the inner ear to the brain.

“Acoustic neuromas are generally slow-growing, but there are some that grow faster than others. Every patient is different,” Dr. Lee says. “The tumor’s growth pattern is generally slow, but it is kind of like the final straw that breaks the camel’s back in the sense that you don’t know how much of a load the nerve can carry.”

Penn Medicine is considered one of the leading authorities on the treatment of acoustic neuromas. Its quality-of-life scale, PANQOL, developed specifically to evaluate the treatment of patients with acoustic neuromas, has become the international standard, used by leading centers throughout the country.

Almost immediately, a reeling Melissa latched onto Dr. Lee’s confidence. “He was like a comfort blanket,” she says. “He was so genuine and informative and so willing to share all these cases with us that allowed us to make an informed decision.”

Dr. Lee presented them with two options: gamma knife radiosurgery and retrosigmoid suboccipital surgery. At 2.8 centimeters, Melissa’s tumor was not the largest Dr. Lee had seen, but the mere nature of an acoustic neuroma makes its presence ominous. “Although they usually start in the ear canal, they can grow toward the brain and push on the brainstem itself,” Dr. Lee says.

With open surgery, Melissa’s balance nerve would need to be removed along with the tumor. She’d likely also lose functional hearing even if the hearing nerve itself were preserved. In contrast, Gamma Knife radio-surgery would not remove any of the tumor, but rather stop it from growing. But as long the tumor remained in place, the numbness that Melissa was experiencing in her face and neck, which was actually blinding facial pain, would only intensify. So Melissa chose the retrosigmoid craniotomy and microsurgical resection.

The kids are alright

Shortly after her diagnosis, Melissa began seeing a therapist to help her come to terms with her emotions and figure out how to present this to their kids, who are ages seven, nine, and 11.

“What we did, we made this a very positive thing. We gave them small doses of information and presented it in the most positive light, like, ‘Thank goodness Mommy has the best doctors and they were able to find this and get it out,’” Melissa says. “All the while, we remained very honest with them. I told them, ‘If you see Mommy crying, it’s OK to be sad. We’re all in this together.’”

With the tumor not posing an immediate threat, Melissa put off her surgery until January and then set about shaping a Thanksgiving and Christmas that her family would never forget.

“Our friends couldn’t believe the amount of stuff we packed in, but I didn’t know what the recovery was going to be like, and I wanted to make sure we had enough memories to sustain us for a while,” she says.

On the morning of her surgery, Melissa gathered her things and donned a pink superhero’s cape that was sent by a friend. “I knew my kids were watching and I knew I had to teach them,” she says. “I’d never wish my kids would have to endure this, but it taught them compassion and resiliency.”

Lying on the operating table, Melissa braced herself for the possibility that the conversations being had around her would be the last words she’d ever hear. But when she came to, she found her husband by her side and her hearing still intact in her left ear.

Dr. Lee and ENT surgeon Douglas Bigelow, MD, were very pleased with the seven-hour surgery. The tumor was successfully removed with no evidence of residual tumor on the MRI scan.

Persistence = progress

Melissa was discharged a couple days later, but her recovery was only just beginning. Her brain needed to be retrained to do so many things, she says, including sleep.

“I’d wake up at 1 a.m. thinking I’d slept the whole night. Other nights, I’d wake up from a nightmare, sweating,” she says.

Compounding matters, with her body adapting to having only one balance nerve now, Melissa’s equilibrium was way off. But the woman who seemed to be in sprint mode during every waking hour was gradually beginning to appreciate the progress in simply walking the halls of her home hand-in-hand with one of her kids.

Two months after surgery, Melissa’s sleeping through the night, “for the most part.” She wakes most mornings with a headache, but it goes away with Tylenol or Motrin. An avid reader, she recently began picking up books again. She gets lost in the plot sometimes, but then she just doubles back and reads the part where she got confused again.

Dr. Lee says the balance issues usually resolve themselves in three months. Beyond that, he expects Melissa’s quality of life to be “excellent”.

“Her numbness and facial pain are resolved, and I expect her to be 100 percent in the near future,” he says.

“I’m trying to do my best every day and make progress in some way. Every day is different, but that’s OK,” Melissa says. “I was running at 150 percent before. Now, my priorities are a little different. I hope to get back to living the life that I did, and I will.”