A nurse practitioner told Winona native Chris Miller (WHS '92, WSU '96), son of Jim Miller, that the growing pressure in his ears that would never "pop" and the gradual loss of hearing in one ear was caused by sinus allergies. That diagnosis seemed suspect to Miller, especially after medication failed and the problems grew worse, but he never could have imagined how serious the true problem would prove to be.
"Diagnosis: Brain Tumor" is Miller's account of discovering that a benign brain tumor was on the verge of paralyzing him and of the life-altering brain surgery that followed. He self-published the book through Amazon on October 29, 2012.
When Miller came to his nurse complaining of the constant pressure and loss of hearing, she examined his ear and nose, prescribed a nasal spray and over-the-counter allergy medicine, and told him to "take more hot showers." Miller was skeptical, but complied.
Two months later, Miller's symptoms had not improved and he returned to his nurse. "She yelled at me for not taking the stuff right. Or often enough. Or whatever. I quit paying attention..." he wrote.
Instead of seeking a second opinion, Miller just ignored the problem, hoping it would go away. It did not.
A year later, Miller finally decided to see a specialist. "My jaw muscles were constantly sore from all the manipulation [of trying to "pop" his ears], and the weird pressure was driving me up the wall," he wrote. The nurses and doctors he saw this time took his problem seriously and eventually discovered the cause. Miller said he should have sought an expert opinion immediately.
Miller's new doctors were not sure at first what was causing his symptoms, so they conducted an MRI scan of his head. What the they found surprised them; Miller had an acoustic neuroma, a tumor attached to his acoustic and facial nerves. Miller writes that the tumor was so large, the brain surgeon he saw "was shocked that the tumor hadn’t already affected my facial nerve, and he even seemed surprised that I still had full use of my faculties."
Miller was faced with a choice: let the brain surgeons open up his head (and possibly leave his face paralyzed) or face an untimely death.
The decision was harder than it might appear. Miller writes that he was so afraid of the stigma of having a "droopy," paralyzed face that he was ready to die instead.
Miller's tale is simultaneously heart-rending and hilarious. Miller's candor about his own fear and vanity forces readers to take an uncomfortable look in the mirror—"How would I react?" However, the same openness allows Miller and his readers to laugh at the more absurd moments of the experience.
At one point in the book, a neurosurgeon asks Miller and his wife to sit down so he can explain the upcoming surgery. "Dr. Kim reached up to his head and traced a curve on his scalp above his ear and got as far as, 'We'll start by cutting off your ear...' when I passed out," Miller wrote. "Had I really just passed out in a doctor's office? I was never going to live this one down. Wait—did he say he was going to cut off my ear?"
"It's so supposed to be light hearted," Miller said. "What's going to help people isn't my talking about all the miserable crap that happened to me; what's going to help people is: 'How ridiculous that this happened or that happened?'"
Miller did have the surgery. He lost his hearing in one ear and his face was "temporarily" paralyzed for a year. "That is not what I would call 'temporary,'" he said. Some of his fears regarding stigma were realized; Miller said a man once followed him all around a hardware store, staring at him.
Miller developed and fought off meningitis after the surgery, but is now healthy, with minimal facial paralysis. He said he is incredibly lucky to have come out of the ordeal as well as he did.
"My smile is a little lopsided," he said. "But otherwise, until you see me smile, you wouldn't notice."
Miller said he is incredibly lucky that the situation came out as well as it did. Because of the lack of information available to him about acoustic neuromas, and other people who had suffered from them, he felt the need to write the book after his recovery.
"I thought this was a great opportunity to share my experience," said Miller, who currently resides in Maryland. "I hope that somebody else can grab some little nugget out of there."
In the short time since Miller was first diagnosed in 2009, there has been a great improvement in the availability of resources to help connect acoustic neuroma patients with each other, he said. There is a Facebook group, a Twitter hash tag—#BrainTumorThursday— and sympathy social network CaringBridge.com. "For people who are newly diagnosed, it's a really great opportunity to share the fears, the misgivings, and questions of people who don't understand with people who do understand," he said.
Miller's book is available on Amazon and GoodReads.com. You can learn more on his website www.cmichaelmiller.com.