Acoustic neuroma, melanoma survivor spreads hope, positivity
March 29, 2017
Medically Reviewed | Last reviewed by an MD Anderson Cancer Center medical professional on March 29, 2017
Even when Shannon Long found out that she had an acoustic neuroma, a type of benign brain tumor, her gratitude never wavered.
“I was so thankful that it was me and not somebody else in my family,” she says.
Shannon’s ear had felt stopped up for months, but she didn’t think much of it until she picked up her work phone one day in 2013 and couldn’t hear the dial tone. An MRI showed a large brain tumor was pressing against her brain stem. It had caused 60% hearing loss in her right ear and was impairing her balance.
Choosing MD Anderson for acoustic neuroma surgery
“I went to a bunch of different doctors, but I felt very uneasy about my surgery options,” she says.
That’s when the College Station, Texas, resident decided to look up experts at MD Anderson and found Franco DeMonte, M.D.
“When I went to Dr. DeMonte, I asked, ‘How many cases of facial paralysis have you had and what are my chances for that?’” she says. “Compared to what I’d heard from other surgeons, his numbers were miniscule, and I found such comfort in that.”
Spreading hope and kindness
In September 2013, Shannon underwent her acoustic neuroma surgery.
“What concerned me was thinking about my friends and family sitting for 10-and-a-half hours and waiting and worrying about me,” she says. “I wanted to give my daughter and her two best friends something to get the focus off of me and think about other people.”
So Shannon created a scavenger hunt full of random acts of kindness. She had the girls, who were 17 at the time, give “thank you” cookies to MD Anderson employees and pass out water bottles to the valet staff. She also created motivational messages and asked the girls to tape them on bathroom doors and hide them between the pages of magazines in the waiting rooms. She had them drop off bubbles, coloring books and crayons in areas where children were playing, and leave quarters by the vending machines.
“They really enjoyed it,” Shannon says. “I think anybody who’s ever been to MD Anderson, regardless of what you’re there for, you come away with such a piece of perspective. I never, ever, ever leave without feeling like I am the luckiest person that I just walked out of MD Anderson, and I wanted the girls to see that, too.”
Life after acoustic neuroma surgery
Shannon’s surgery went exactly as planned. She spent six days in the hospital and then continued her six-week recovery back home.
“The first three weeks were really hard,” she says. “Getting my pain under control was hard. Food didn’t taste right. Light and noise and movement were hard the first few weeks.”
But with time and vestibular therapy, all of that improved. Shannon also has learned to live with the permanent side effects: total hearing loss in her right ear, her right eye’s inability to produce tears and the right side of her mouth’s inability to produce as much saliva as the left.
“I was really prepared for it to be difficult to hear, but in reality, I’m the one person in my family who asks people to turn things down. Because everything I hear comes into one place, everything seems louder, which was opposite of what I expected,” she says.
Giving hope to other acoustic neuroma patients
Now Shannon tries to give hope to other newly diagnosed acoustic neuroma patients.
“I read a bunch of books about acoustic neuroma, and they are all worst-case scenarios. And what I realized is that the best-case scenario people are busy living their lives and not talking about all the horrible things that can happen,” she says. “I’m not saying that those things can’t happen, but people also need to hear the positive things, so I try to be the light for somebody else.”
Shannon still returns to MD Anderson for follow-up appointments with DeMonte and now also Merrick Ross, M.D., who successfully removed a low-risk cancerous mole on her back on Feb. 1, 2017. And every time she comes back, she leaves behind the same motivational messages she once had her daughter post across MD Anderson.
“I am very, very thankful and very, very blessed, and I want others to feel hope,” she says.
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