Lowell woman shares experiences from 13 surgeries, life of pain with others
Thursday, November 27, 2003
There was something powerful in the telling of it as Lisa Newcomb, 38, repeatedly pounded her fist into her palm, punctuating each blow with a loud "Bam!"
Sitting at her kitchen table, this diminutive wife and mother of two struggled to give expression to the pain she has lived with her entire life and which now haunts her sons.
Lisa Newcomb, her mother, and her sons Brandon, 11, and Noah, 7, have a Chiari Malformation, but it wasn't until Brandon's diagnosis at age 5 that she was able to give a name to the source of her severe headaches and pains, nausea, extreme fatigue and limbs that felt as if they were filled with lead.
"My mother remembers that my first words were that my head hurt. As a little girl I always had headaches and nausea," she said. "The brain hits our skulls."
Over the years, Lisa Newcomb was inaccurately diagnosed with a litany of ailments beginning at age 6 when doctors told her parents she was simply wanting attention. She was subsequently diagnosed with such disparate illnesses as sinus problems, systemic lupus, multiple sclerosis and fibromyalgia.
"In junior high, I tried sports, but I had severe leg pain and bad headaches, so I dropped out, but I thought it was normal," she said.
Her mother, Laura Snyder, has a less debilitating form of Chiari and remembers her daughters problems. "I told Lisa it was growing pains, because that's what I had always been told," she said. "I let her be on a gymnastics team. We know now she could have killed herself."
But Lisa Newcomb persevered through it all, even studying nursing for a time.
"In college, my symptoms worsened, and I developed new ones. I had difficulty in swallowing," Lisa Newcomb said. "When I would exert myself, I would pass out. I couldn't lift patients."
So, she made the difficult decision to leave college.
"I was so angry with her," Snyder said. "She had straight As, and she only had three courses to go to graduate."
Still undiagnosed, she married John Newcomb.
"When I was pregnant with Brandon, my symptoms worsened again. I lost the use of my legs. I constantly felt like my head was going to blow up. I was blacking out," she said. "The doctors said that some people just have trouble in pregnancy."
Knowing what she knows now, Lisa Newcomb decries the uninformed medical professionals that let her slip through without a proper diagnosis, all the while wasting time.
And by the time she was diagnosed at 32 by Dr. David Frim of the University of Chicago Children's Hospital, time was not on her side. A Chiari Malformation is best treated at a young age.
Still, after undergoing a series of surgeries in 1997, Lisa spent two glorious weeks feeling what life without pain could be like.
"I felt so good for two weeks. I did so many things with the kids, then boom, one day all of my symptoms came back," Lisa Newcomb said. "They did a spinal tap and found I had high intracranial pressure. It's something related to Chiari, but they really don't know. They're still learning so much."
Now 44 pounds lighter as a result the surgeries - she has had 13 - she says she has had enough.
Frim replied, "Fine until you start to lose your vision."
Family and friends say there has been a positive result of Lisa Newcomb's affliction.
Family friend the Rev. Chuck Hochmuth said, "She has thrown her life into it."
And her husband John Newcomb sees it as his wife's calling.
For six years, Lisa Newcomb has been a volunteer to Frim's Chiari Malformation patients. From 11 a.m. to 7 p.m. each Thursday she sees patients, talking with them about their symptoms. "They're thrilled to meet someone else with it, because they've been told for so long that they're crazy.
"If they're having surgery, I go through the entire thing with them. I show them my incision. I let them know their neck will hurt. With the children, I take them on a tour of the hospital."
Lisa Newcomb also established and directs a support group at the hospital.
Recently, she came on board as a paid research associate to Frim, who provided her with a computer. She works from her home at her own pace.
It's the only way she can work.
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