Sunday, June 17, 2018
Health

They have a common bond in a rare diagnosis: acoustic neuroma

ZEPHYRHILLS — Occupational therapist Evelyn Lopez was treating a patient at Florida Hospital Zephyrhills when she casually mentioned her hearing problem to the student observer working with her. Over the course of the conversation, they discovered a mutual celebration of survival following individual journeys through fear.

"We were shocked," said Kaci Jacobs, the student. "We both survived acoustic neuroma."

There are no support groups for this extremely rare brain tumor found in just 13 of every 1 million patients. It's a noncancerous, slow-growing tumor that develops on the main nerve leading from the inner ear to the brain. Because branches of the nerve affect balance and hearing, pressure from an acoustic neuroma can cause hearing loss, ringing in the ears and unsteadiness.

Lopez, 51, first noticed numbness in her lower lip and tongue in 2007. Following several physician consults and an MRI, she received the dreaded tumor diagnosis over the phone.

"I was at work," she said, "and they tell me I shed one big tear. My co-workers, my husband, and two children collapsed into sobs. My knowledge of medicine and then my faith kicked in. I had to be strong for my family."

In September 2007 she underwent a delicate seven-hour procedure at Tampa General Hospital. Gradually the imbalance, numbness and ringing in her ears improved. She returned to her occupational therapy post the following January.

• • •

In June 2012, Jacobs was finishing physical therapy training and planning her wedding. Suddenly she recognized hearing loss during a cellphone conversation with her brother.

"What's wrong with the phone, I wondered," she said. "Within the next two weeks I developed double vision, numbness and dizziness when I turned my head to the left."

But Jacobs was preoccupied studying for an important physical therapy exam at Andrews University in Michigan. She had learned that stroking the lateral side of a patient's foot should create a clawlike reaction. She self-administered another test, a finger flick to her opposite middle finger. Her splayed toes and twitching fingers raised a red flag.

"I was in denial until then," she said. "Why now? I'm getting married and I've never even had a cavity."

Her case was urgent and she was in the operating room within two weeks. A mosaic of porous and globular growths was compressing her brain stem. A neurosurgeon removed an apple-sized tumor from her cranium.

Jacobs developed complications. She lost 15 pounds while enduring leakage of spinal fluid, a spinal tap and "migraines on steroids."

Eventually her condition improved but it took a month to regain her balance and ability to sit up.

Medical experts encouraged her to go ahead and get married and, on July 29, 2012, Kaci and Nolan Jacobs exchanged vows.

"I went through all the phases of grief," Jacobs, now 27, said. "These days I'm reassuring everybody else. I tell them, 'No, it's not my tumor coming back. I just have a cold.' "

• • •

Because that type of tumor can impact facial nerves, their eyes were affected. Jacobs and Lopez have eyelid implants and wear eye patches at night, and they always carry eye rewetting solution. Both have total hearing loss to their affected sides, a result when the blood supply to the tumor is the same as that of the inner ear.

Otherwise they are cured.

Tampa ear, nose and throat surgeon/neuro-otologist Jay B. Farrior has treated several hundred acoustic neuroma patients over the past 30 years.

For larger or more complicated tumors Farrior always teams with a neurosurgeon.

However he praises refinement of techniques that have become effective alternatives.

"You can observe and monitor if the tumor is peanut size or smaller," Farrior said, "because there's a 50-50 chance that they won't grow. Now I can do . . . outpatient procedures with relatively low risk. The tumor will still grow, slowly, but we can preserve hearing and facial nerves."

Both Jacobs and Lopez are smiling today, even joking. Their mutual experiences have informed their practice with patients.

"It's weird to be on the other side," Lopez said. "We were supposed to be helping other people."

Jacobs nodded. "I cried, I complained and pretended to be asleep when physical therapists came in. I was one of those real grumpy patients."

Now, the two therapists work acute cases together and are Facebook friends.

"Patients can hear our stories," Lopez said, "and realize that we're fine and that they can do this too. Between us, we have two good ears. We like to call ourselves the twins."

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