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A long journey

Published: Tue, June 26, 2012 @ 12:08 a.m.

Ed Port has undergone three surgeries in the past year


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.”


1peggygurney(408 comments)posted 4 years, 1 month ago

God bless him. I pray that all of this works out for him.

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2walter_sobchak(2716 comments)posted 4 years, 1 month ago

Fantastic! Why don't we ask Ed if he believes that Dr. McKinnon is overpaid as some people believe doctors are. God bless Ed and Dr. McKinnon with his skilled hands.

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3Sunny(25 comments)posted 4 years, 1 month ago

Ed, as a migraine sufferer myself I am so happy that you no longer suffer on a daily basis with those headaches. You are an incredibly strong person and an inspiration to us all. I think you look wonderful, Ed.

May God bless you and enrich your life in ways that you never dreamed possible. You deserve it! Thank you for sharing your story with us.

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4janeyblue(227 comments)posted 4 years, 1 month ago

@jrolley,are you saying Dr.McKinnon learned this in elementary school ? Middle and high school ? He has a gift. But he was taught to prefect this gift in residency. Many long years I may add. Not the same caliber of teachers that teach little Johnny and Susie how to count. Dr. McKinnon is a doctor with the soul and skill of an artist. Please do not make this political. Leave it as it is,a wonderful story of a courageous man and a compassionate doctor.

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5peacelover(839 comments)posted 4 years, 1 month ago

What an inspirational story. Best wishes to Ed and all who have helped him in his journey.

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6beach4life(11 comments)posted 4 years, 1 month ago

Best wishes to Ed - what a wonderful uplifting story about the people of our valley!

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7rickking123(331 comments)posted 4 years, 1 month ago

Probably should commend the doctor's parents too then. I'd be willing to bet that genetics and maybe a good home environment played the biggest role in his success and abilities.

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8gbeans01(11 comments)posted 4 years, 1 month ago

Such a wonderful story, Ed! You're an amazing person for all you've endured and a wonderful example to all of us. Best wishes to you!

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