(William DeShazer, Chicago Tribune)
July 12, 2011|By Clifford Ward, Special to the Tribune
As the Ohio resident sat on the edge of his bed at St. Joseph Hospital in Lincoln Park late last month, his left eye was swollen shut, and his bruised cheek looked ominously enlarged. Tidy rows of sutures ran along the top of his head, the side of his face and down his nose.
"It’s like I walked down the wrong side of the street or into the wrong boxing club," Port said.
But he was smiling as he said it.
He had been through an ordeal, but it’s one that for the first time in his life portends a different future for the 41-year-old. The polite, soft-spoken man has neurofibromatosis, a genetic disorder that causes benign tumors to grow on the ends of nerves. It’s a condition that has affected Port not only physically throughout his life but socially too.
About a week earlier, on June 22, Dr. McKay McKinnon, a Chicago surgeon, led a team through a 12-hour surgery, excising almost all the branches of a large tumor that had badly disfigured the left side of Port’s face. McKinnon and his team then rebuilt Port’s cheek and eye area with titaniumplates and bone taken from his skull.
The surgery was the first — and most extensive — of what may be three procedures for Port at St. Joseph, and his doctor said he thinks there’s reason for optimism underneath the postoperativeswelling.
"I think Ed’s going to be able to walk down the street and not have people give him a second look," McKinnon said.
Port, who lives near Youngstown, was diagnosed with neurofibromatosis (NF) at 3. He said his mother noticed facial swelling when he was 1, but the family doctor dismissed it as baby fat. He had his initial surgery at 7. It lasted 10 hours, "and I almost coded because I’d lost so much blood," Port said.
It was the first of an estimated 20 operations stretching into the 1980s and his teen years. But the tumors always grew back. And his appearance made Port the butt of jokes by taunting schoolmates.
"They’d call me fat face or monster," he said. "Sometimes I’d call them names back. Quite a few times, I would just cry."
By the late 1980s, Port was no longer covered by his father’s insurance, and the new HIV/AIDS scare made further operations risky because Port’s bleeding during surgery required a lot of transfusions.
In the meantime, he got on with his life. He attended college and graduated with a business degree. But he learned that his disfigurement would limit his options. A government job he had as a young man disappeared when the county commissioner ordered him fired and told Port’s boss that Port shouldn’t be seen in public.
Other times, Port said, he would get enthusiastic responses from potential employers during telephone interviews. But Port said that when he showed up in person for an interview, a job offer never materialized. Eventually, he found work at a call center, and he’s been there 12 years.
And his tumor continued to grow. About seven years ago, it covered his left eye. And it crushed his ear canal, resulting in hearing loss in his left ear.
About six years ago, Port heard about McKinnon. But Port didn’t have insurance and found that obtaining it was almost impossible. He finally secured coverage, though he expects a fight because his surgery can be considered "cosmetic."
Port has set up a website — edneedsamiracle.com — where people can donate to help offset his medical and travel expenses.
In February, he traveled to Chicago and met McKinnon, who has performed surgeries on hundreds of NF patients, perhaps the most of any other doctor in the world, he believes.
"If there’s someone who’s done more, I’d like to hear about him," said McKinnon, a native North Carolinian who has worked in Chicago since the 1980s.
McKinnon said Port was among the most disfigured NF patients he’s treated. Since NF is a genetic condition, it technically can’t be "cured," but the doctor said his patients usually don’t experience regrowth because his technique involves radically cutting off the branches of the tumor at the points of origin.
After his discharge from the hospital June 30, Port spent time in Chicago with two aunts from Ohio who traveled with him. He headed home on Saturday. His long-term goal, he said, is to become a professional speaker, spreading awareness about NF. He also might create a foundation.
"I want to let people know there is a doctor out here who can do phenomenal work and help them if they want it," Port said.
And he had some simple, short-term goals.
"I’d like to get a pair of sunglasses that fit," he said. "And I’d like to get a ball cap that fits right."