Matt's story

    Grade 4 Acoustic Neuroma

There were four primary symptoms: blurry vision, dizziness, headaches, and the throbbing pain at the back of his head. And then, of course, there was the matter of the "beer cave."

Matt, who sells beer for a distributor, must enter vendors' beer coolers – known in the business as "beer caves" – to tally up inventory among the cases of brew. Every time he entered a beer cave, his ears immediately clogged up and he developed an instant headache. He had been entering beer caves for years and had never had this problem before.

"I knew something was not right," he says. "I'd be at work or at home and would get dizzy and have to brace myself. I thought it was vertigo or an ear infection or something like that. Eventually, my sister, who is a nurse, suggested that I should see an ear, nose and throat doctor, because dizziness can be a sign that something isn't right with your ears."

The ENT specialist found no sign of infection, but because Matt was experiencing dizziness and blurry vision, he was concerned. He ordered an MRI, which revealed the source of Matt's complaints: a tumor the size of a golf ball wrapped up in the nerve responsible for hearing and balance and pressing against his brainstem. Says Matt: "Never in a million years did I think that I had a brain tumor."

Within days, Matt met with Vincent DiNapoli, MD, PhD, a neurosurgeon with Mayfield Brain & Spine, and his ENT surgeon, Joseph Breen, MD. Understandably nervous, he took his older brother and parents with him. "Dr. DiNapoli is a very impressive guy; he gets right to the point, knows how to talk to you on a personal level," Matt says. "He said the tumor was 4 centimeters. It was bigger than what they're normally used to seeing."

In fact, Matt's tumor was a grade 4 -- the highest number -- on the Koos grading scale for vestibular schwannomas, also known as acoustic neuromas. "It was exceptionally large," Dr. DiNapoli says. "We see an acoustic neuroma that large once or twice a year."

Matt went into surgery knowing that he would emerge with total hearing loss in his affected ear. In order to remove the tumor, which had grown out of Matt's vestibulocochlear nerve, Drs. DiNapoli and Breen would need to sever the nerve. At the same time, they would be extraordinarily cautious when working around Matt's facial nerve, which was also entwined in the tumor. The facial nerve controls facial muscles and carries sensory information from the tongue to the brain.

"Our primary goal when the tumor is that large is to preserve facial function," Dr. DiNapoli says. "When the tumor gets that big it's not only wrapped around the 7th cranial nerve (the facial nerve) and the 8th (vestibulocochlear nerve), it's also touching 5, which is responsible for facial sensation, as well as 9 and 10, which are responsible for swallowing and vocal ability. All that becomes an issue."

Drs. DiNapoli and Breen performed the surgery over a period of 13 hours. The 8-inch incision extended from the top of Matt's ear to his neck.

"Ultimately we were able to remove the entire tumor, and Matthew did excellent," Dr. DiNapoli says. "Following the surgery he only had some symptoms of dizziness and imbalance, but that has resolved."

Matt was off work for 5 months while he recuperated and regained his strength and balance. Despite losing all hearing in his left ear, he is grateful that his tumor was benign and that his life is pretty much back to normal. He is also grateful for the support he received from family, friends, his church, and his workplace.

"It helps to have people in your corner," he says. "The scariest part is before the surgery, when you don't know exactly how it will turn out. But after I had two weeks to think about it and process it, I was ready. And now that it's over and done, I feel great. I realize that when I got the phone call with my diagnosis I was ready. I prayed and was blessed by a priest. Lots of people were there for me."

Matt adds that he had faith in his doctors. "I can't say enough good things about those two guys. I'm more than grateful. They were very likeable, professional human beings. Dr. DiNapoli's physician's assistant, Angela Kramig, was very nice as well."

Today, Matt is even able to joke a bit about his hearing loss. "I kid with my boys: If you've got something bad, say it on the left side, if it's something good, say it on the right side."

And as for the beer cave, it no longer clogs up his ears or causes headaches. "It's kind of weird," Matt says with a smile. "In a good way."