A New Outlook on Life for Port




Ed Port misses his cat, Spike. And he wants to do some simple things that almost anyone else would take for granted.

“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.”

Port, 41, of Austintown, and his doctor say marathon surgery in Chicago last week succeeded in removing the many branches of tumor that had disfigured his face, cost him the use of his left eye and much of his hearing.

Port, whose website “Ed Needs A Miracle” follows his battles with the genetic disorder neurofibromatosis, was discharged from the hospital Thursday.

He continues to recuperate this weekend at a Chicago hotel. He said he plans to spend several more days in Chicago before returning to Ohio, accompanied by two aunts from Ashtabula who are staying with him.

“I’m feeling good today,” Port said from his hospital room in his last few hours before discharge. “For a couple days, I was really groggy coming out of surgery. I guess more so than normal because I had never went through a 12-hour surgery.”

The effects of the lengthy operation June 22 are still apparent, with some swelling and bruising.

Port’s left eye is swollen shut. Many sutures run along his cheek and nose and on the top of his head. A portion of Port’s skull was removed during the procedure, to be used with titanium plates to rebuild his cheek and orbital bone.

But Port said his swelling has steadily receded. And his surgeon, Dr. McKay McKinnon, said he thinks he has permanently arrested the tumor.

“I think Ed’s going to be able to walk down the street and not have people give him a second look,” Dr. McKinnon said.

McKinnon said Port will undergo one or maybe two future operations. One will remove a last bit of tumor, and Ed may have cosmetic work done around his mouth and perhaps on his left eyelid if it remains closed. Port had lost the use of the eye starting about 10 years ago when the tumor began growing over it.

McKinnon said the eyelid may eventually open on its own, though it’s too soon to tell.

Port, who was diagnosed with the genetic disorder at age 3 and has undergone an estimated 20 surgeries, said he’s tried using a mirror and his imagination to visualize what he might look like at the end of the process.

As he continues to heal, he is thinking about his short-term future. Port said he wants to come home and build some bridges with some family members with whom he’s lost touch.

He had a message for people of the Mahoning Valley who have encouraged him emotionally and aided him financially.

“I just wanted to let everyone know I want to thank them so very much for all your prayers ... the phone calls from people who just let me know they’re supporting me all the way,” Port said. “They’re a big part of the reason why I was able to get this surgery started.”

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