Roseburg resident Mindy McFerrin hopes a cutting-edge surgery will end years of misery caused by a tumor in the center of her brain.
McFerrin, 39, suffers debilitating headaches, nausea, dizziness, insomnia and double vision. She has moved her family into her mother’s house, where she has become mostly confined to an easy chair in a dark living room. She covers her face with cold packs and towels in an effort to combat the pain in her head.
“The pressure in my heed feels like I’m wearing these goggles that I can’t take off,” McFerrin said.
After years of suffering and futile visits to doctors, who she said were dismissive of her symptoms, she finally received a diagnosis in February when an MRI scan revealed a tumor on her pineal gland, deep in the center of her brain.
She is hopeful that a new surgery pioneered by Los Angeles neurosurgeon Hrayr Shahinian will provide a cure. But the operation is expensive and her insurance company won’t pay the full cost.
The family has started a fundraising effort in hopes of raising enough for a down payment on the surgery in time for the surgery to be performed next month.
McFerrin said she was once a working mother and a “social butterfly.” She quit her job as a medical assistant for a Roseburg doctor’s office in 2005 because she was unable to work through the nausea and pain. She has lost contact with many of her friends and relatives. She said she always wanted to be a mother, but now is largely unable to care for her four sons, ages 13 to 3.
Her mother, Debbie Horton, said the change in her daughter has been devastating.
“This tumor’s taken everything away from her. It’s taking her life,” Horton said. “She is living her life as a mole in a dark house buried under this heap of ice and towels.”
Although her symptoms continued to intensify, repeated visits to doctors proved futile, McFerrin said.
Finally, in February, McFerrin said a new nurse practitioner at the Umpqua Community Health Center, Chris Gessel, really listened to her description of the symptoms plaguing her.
“It was his first day. I was one of his very first patients. I went in with a letter asking him to please take time to look through my medical records before passing judgment on who I was,” McFerrin said.
Gessel consulted with neurologist Jerry Boggs of Roseburg and McFerrin underwent an MRI that finally identified the tumor. If the tumor is not removed it could lead to hydrocephalus, a potentially fatal condition in which fluid builds up in the brain.
Even though the news was bad, McFerrin said it was a relief to know what was wrong.
“I felt like it lifted a 25,000-pound block off me. There’s an answer. There’s a reason. I really am not crazy,” she said.
She is scheduled for brain surgery in Los Angeles on July 8. Shahinian of the Skull Base Institute in Los Angeles will cut a dime-sized hole in her skull and use tiny endoscopes he designed to penetrate natural pathways to the center of her brain and remove the tumor. The 2½-hour procedure replaces an older, nine-hour surgery. That would have required a large portion of the skull be cut open and metal retractors used to push brain tissue out of the way of the operating instruments. According to the Skull Base Institute, the newer procedure reduces the risk of complications and scarring.
In a long-distance video conference, Shahinian told McFerrin the operation has a success rate of 98 to 99 percent — great odds that it could eliminate her symptoms.
“I don’t think at age 30-something you want to be disabled the rest of your life,” he said.
McFerrin believes her tumor is related to spina bifida, a condition with which she was diagnosed at 21 after a tumor and other abnormalities were found in her lower spine. Her father, James Simpson, 67, was a helicopter gunner for the U.S. Army in 1967-8, where he was exposed to Agent Orange. The U.S. Department of Veterans Affairs acknowledges spina bifida as a genetic condition caused by either parent’s exposure to Agent Orange.
She said she hopes someday her brain tumor will also be acknowledged as a result of her father’s service in Vietnam and her medical bills paid for by the VA, but said she does not have time to wait for that to happen.
McFerrin’s insurance will pay only 60 percent of the cost of the surgery because Shahinian is an out-of-network doctor. Shahinian requires a $25,000 deposit by Tuesday. The family hopes to defray costs by raising the money from private donations. They said they have so far raised $1,420, including $820 online.
Donations may be made online at youcaring.com/medical-fundraiser/mending-for-mindy/189265. The family can also be reached through the nonprofit charitable organization LifeCare DCEF, whose board is made up of representatives of several local churches. Horton and her husband, Roger, serve as pastors and counselors there. LifeCare is at 1614 N.E. Vine St., Suite 2, in Roseburg. The phone number is 541-391-4322.
• You can reach reporter Carisa Cegavske at 541-957-4213 or firstname.lastname@example.org.