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Facing new look on life w
After surgery, Port adjusts to appearance, opportunities
By Denise Dick
austintowN
Ed Port feels nothing but good when he puts his hand to his face.
He’s still tired, and facial swelling and discoloration remain, but he’s happy to be home.
Port, 41, returned to his township apartment last weekend after more than a week in a Chicago hospital where he underwent a 12-hour surgery June 22 to remove tumors that covered the left side of his face.
He still has healing and more surgery ahead of him, but since the tumors’ removal, the left side of his face more closely resembles the right, and his features are less obscured.
“When I touch the back of my head, the left side feels like the right,” he said. “It’s not mushy.” Without the tumor, Port can actually feel the left side of his skull.
That symmetry is something that’s been lacking since Port was a young boy. His head feels lighter, too.
He looks forward to mundane things, such as being able to find sunglasses and a baseball cap that fit. But he has loftier aspirations, too.
“I’m looking forward to better job opportunities,” Port said. “I’d like to get into public speaking about neurofibromatosis and motivational talks.”
Last year, he spoke to a group of special- education students at Austintown Middle School and enjoyed talking to the kids, answering their questions and offering encouragement.
Port suffers from neurofibromatosis type 2, a disorder that causes tumors. He was diagnosed at 3 and had more than 20 surgeries during his youth only to see the tumors return.
In adulthood, insurance companies told Port they wouldn’t cover the surgeries he needed, telling him they were cosmetic, Port said.
Once he found an insurance provider that agreed to cover the procedures — at least for now — Port started looking for a surgeon he trusted with the operations.
He found that in McKay McKinnon, a Chicago plastic surgeon who has operated on several neurofibromatosis patients.
The surgeon said he didn’t encounter anything unexpected in Port’s extensive surgery. At least one more surgery will be done, but it’s too soon to say if Port will need additional work after that.
“He’s got a long way to go,” he said.
Port has an appointment Aug. 12 with Dr. McKinnon when the second surgery will be scheduled.
In subsequent surgeries, Port’s left ear will be lifted to be even with the right, connective tissue from his leg will lift the left side of his mouth, the jawbone will be repaired and smaller tumors behind his left ear will be removed.
In the coming weeks, Port can expect a gradual reduction in swelling and healing of his skin, Dr. McKinnon said.
Because the blood supply to the tumors, which also supplies the skin, was cut off, it’s taking the skin longer to heal.
“He potentially could regain some motor function — not where he’s totally lost it in the past,” the doctor said. “You can’t retrieve muscle function where it’s totally lost. We have to make up for it in other ways.”
At Port’s appointment next month, Dr. McKinnon will be better able to determine whether some of the muscle function on the left side of his face will return.
Despite the long road ahead, Port is thrilled with the early results.
“I was amazed by how much of the tumor Dr. McKinnon had removed during the surgery,” Port said.
The mass had destroyed part of Port’s orbital bone (the bone that holds the eye socket) and the cheekbone, so the surgeon rebuilt those using a piece of Port’s skull and titanium.
Even with insurance, Port expects huge medical expenses.
A fundraiser raffle is set for July 30 at Buffalo Wild Wings in the Austintown Plaza, and he expects more events to raise money.
His life isn’t quite back to normal yet. His eye bothers him, and he tires easily, but he and a friend walk around his apartment complex daily, helping Port rebuild his stamina and regain his strength.
His ordeal has touched many people.
Michael Delfratte and Mollie Crowe live downstairs from Port.
“He’s a good neighbor,” Delfratte said. “I know he’s been going through a lot with the surgery.
“During the winter, I was cleaning off my car, and he came and helped me,” Crowe said. “It was really nice. No one has ever done that for me before.”
The story of Port’s struggles has resonated even with people he’s never met.
More than 1,900 people follow his Facebook page, Ed Needs A Miracle, and he has a website with the same name.
“It feels good that so many people out there follow me on Facebook and follow my story,” he said.
Many of them have been wishing him well in their comments and letting them know they’re praying for him.
“From email that I’m getting and comments on Facebook, they say that I’m a hero to them — that my story is inspirational,” Port said.