A long journey

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One year has passed since Ed Port, 42, of Austintown, underwent his first surgery as an adult to remove large tumors that obscured much of his face. Two more surgeries followed, and Port expects to have at least two more. Port suffers from neurofibromatosis, a genetic disorder that causes large tumors.

By Denise Dick



Sometimes when Ed Port wakes up early in the morning, he forgets the tumor that covered half of his face for much of his life is gone.

“Sometimes I go to rub my head and then it’s like, ‘Oh yeah, it’s gone,’” the township man said.

It’s been a year this month since Port, 42, underwent his first surgery as an adult to remove the large tumor that covered the left part of his face, warped his features and limited his vision and hearing.

Port suffers from neurofibromatosis, a genetic disorder that causes the tumors.

He endured several surgeries as a child, but the tumors always returned.

As an adult, he encountered difficulty finding insurance to cover the needed surgeries and a doctor qualified and willing to do them.

He set up a website, Edneedsamiracle.com, to raise money and awareness, and last year, he found both a qualified surgeon with whom he felt comfortable and an insurance company that agreed to cover most costs.

Three surgeries later, Port’s miracle is more than halfway fulfilled.

But it hasn’t been easy.

Since the first surgery, which was the most extensive, Port’s vision in both eyes is worse. He has to use a magnifying glass to read smaller print and he needs glasses.

The first surgery lasted 12 hours and most of the large tumor was removed. He lost a lot of blood and spent time in intensive care.

The second surgery last October lasted about 10 hours and the plastic surgeon, Dr. McKay McKin-non in Chicago, removed smaller tumors and worked to reshape some of Port’s facial features. Port lost a lot of blood and spent time in intensive care after that surgery, too.

After his release from St. Joseph Hospital in Chicago, his ear became infected and he stayed with his aunt in Ashtabula for additional care.

The third surgery last March took about six hours and Dr. McKinnon worked on Port’s eyelid and tried to make the facial features on Port’s left side more even with the right.

Port expects three more surgeries and he plans appointments with an eye specialist to try to improve his vision.

He returns in August to see the plastic surgeon and hopes for the fourth operation — when smaller tumors will be removed along with more work to adjust his eyelid — before the end of the year.

In the meantime, Port returned to work last April to his job at a call center. Co-workers there donated about 1,100 vacation hours to him after his own vacation and other time ran out.

The migraines that plagued him daily for years are almost gone.

Morningstar Entertainment, a California-based video production, filmed Port’s second surgery and has visited his home several times for a documentary, “My Giant Face Tumor,” that’s expected to air on TLC in the coming months.

His post-surgery face still draws looks from strangers on the street, but they’re different kinds of stares.

“Before people would gawk and stare,” Port said. “Now the looks have changed to concern.”

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