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W.V. family walks for hydrocephalus
Submitted by Charity Yodis on Thu, 09/11/2014 - 10:00pm
The Weinstein family of Goodyear will be walking together Oct. 4 to raise awareness for a disease many do not hear about too often.
When Mindy Weinstein was just 14 years old, she had to be whisked off to the hospital for life or death brain surgery.
Terrible nausea and headaches had made her unconscious, and that is when the doctors diagnosed her with hydrocephalus — a condition where the body is unable to drain the water around the brain and causes the brain to swell.
“I had symptoms my whole life, I just didn’t know,” she said.
Surgeons implanted a shunt, or a tube that helps drain the fluids from the head, and life resumed as usual.
After her first month of marriage, seven years after the diagnosis, her shunt began to fail.
Another shunt was implanted, but became infected after a few months. She became unresponsive and her husband, Mike, had to make a major medical decision for her.
Instead of replacing the shunt with another, through prayer and family advice, they chose an alternative procedure, Mike said.
“Being married for one year, I was making life and death decisions about my bride,” he said.
The procedure is known as Endoscopic Third Ventriculostomy (ETV). A hole is carved into the brain that allows the fluid to drain without a shunt.
“There’s not many of those surgeries, it’s still very rare,” Mindy said.
Since doctors performed the ETV on Mindy about 13 years ago, she’s gone to the doctor for check-ups, but hasn’t needed any more surgery.
Not only was her survival a miracle, but so was having two sons, Mindy said.
“Your brain controls a lot. So there was a big question of whether I would ever be able to have kids … so I think of that as a miracle, that I survived four brain surgeries and I have two boys,” she said.
Her sons are 8-year-old Quentin and 5-year-old Bryson.
Mindy said she hopes the hydrocephalus walks will help raise awareness about the issue.
“It’s scary because people just don’t know about [hydrocephalus],” she said. “Definitely more awareness needs to be made about it.”
The Weinsteins, along with other family members and friends, will begin walking at 10 a.m. Oct. 4 at Steele Indian School Park in Phoenix.
The last Hydrocephalus Association Walk, in 2012, had 600 attendees and raised $30,000. To sign up for the walk or donate, visit hawalk.kintera.org/phoenix.
“It’s always a good time,” Mindy said. “You can learn about the condition and just supporting people, I mean it’s very moving, it’s emotional.”
Charity Yodis can be reached by email at firstname.lastname@example.org or on Twitter @ckyodis.
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