All throughout her childhood and some of her adult life, Mindy Weinstein has had headaches.
Bad headaches that would make her nauseous, impair her vision and cause her to be lethargic.
Then, one morning when she was 14, her parents couldn’t wake her up and had to use smelling salts to get her to come to before they carried her into the hospital where she was diagnosed with the flu.
But that was not the case. When she became unresponsive and comatose, doctors knew something more was wrong.
Weinstein, who nearly died, had hydrocephalus, commonly known as water on the brain, and had to undergo surgery because an MRI showed her brain had swelled four times its normal size. A shunt had to be implemented during the surgery so it could drain the excess fluid and alleviate the pressure on her brain. She has undergone four brain surgeries overall, three in her adult life.
“It was painful, very painful,” Weinstein, 32, said of her condition. “One ventricle in my brain was larger and one was smaller, causing it to be restricted and back up with fluid. It can be very deadly. When things go bad, they go bad really fast.”
Now, she and her husband, Michael Weinstein, want to help others become more aware of the condition that mostly affects babies and young children.
On Nov. 13, Mindy and Michael Weinstein will be participating in the Phoenix Hydrocephalus Association Walk, a national event to raise funds to research prevention and a cure for the condition. Nearly 6,000 babies are born with hydrocephalus every year and 1 million people in the United States live with it, according to the Hydrocephalus Association.
The walk will be at the Phoenix Zoo, 455 Galvin Parkway, and will last from 8 a.m. to 10:30 a.m. The walk is free to take part in, and registration for the event is one hour before its start.
The Weinsteins participated in the walk in Phoenix two years ago. The 2010 walk was held in February, instead of the fall, and raised $20,000 for the Hydrocephalus Association, according to walk organizers.
This year, organizers of the walk are expecting at least 150 participants, but the registration list is growing.
“An awareness needs to be raised,” Weinstein said. “People need to know about the symptoms and that the condition is treatable.”
Hydrocephalus is an abnormal accumulation of fluid on the brain. The condition is chronic, life-altering and life-threatening and anyone can be diagnosed with it at any age. The most common way to alleviate pressure from the condition is to implement a shunt during surgery, but even that has a 50 percent failure rate; it can become blocked and infected, requiring replacement.
Since Weinstein’s initial surgery, she underwent three more brain operations in 2000 and 2001. The second surgery was in the first month after her wedding when she had to have the shunt replaced because it was infected. Her last two surgeries were within a week of each other in 2001. The last one included a ventriculostomy, a procedure that involves creating a hole within a cerebral ventricle for drainage.
Weinstein, who works as a web marketing director for Virginia-based Foster and has written two books, “Rich and Thin” and “Money Trouble,” still has the condition that has come close to taking her life. However, she hasn’t suffered any more severe symptoms from it for nearly a decade, but said she always worries when she gets a headache.
Michael “Winey” Weinstein is director of investments for Dominion Real Estate Partners. He also writes an opinion column for the Tribune and is host of The Mike and Winey Show which airs from 3 to 5 p.m. Saturdays on KTAR (92.3-FM).
He said his wife’s condition was an eye-opening experience.
“Here we were, about to get married, and her mother sat me down and told me, ‘Hey, this is what you have to look for,’ if she started showing symptoms. And then, about a month after our wedding, I was making life-and-death decisions when Mindy went into the hospital. But, after the last surgery, we’ve been very lucky and have been very blessed.”
Jennifer Richards of Litchfield Park, who is co-chair of the this year’s walk, also has a close connection to hydrocephalus that is continuing to affect her child and family.
Her 4-year-old daughter, Emma, was diagnosed with the condition when she was 2 weeks old and has undergone six brain surgeries, her most recent ones at Cardon Children’s Medical Center in Mesa.
Because of hydrocephalus, Emma has cerebral palsy, epilepsy, is legally blind and has to undergo various therapies to function.
Last week, Emma experienced more episodes of her eyes shaking and being unable to walk that caused her to go to Phoenix Children’s Hospital, where doctors are trying to determine whether her shunt is malfunctioning or she is having seizures, her mother said. If the shunt is failing, Emma will have to undergo her seventh brain operation.
“Our biggest hope is that we will have a cure for this condition,” Richards said. “If Emma gets the flu, we don’t know if it’s the flu or because of hydrocephalus. It’s always a guessing game because the symptoms are similar.
“She has gone through a lot. We believe raising an awareness of this condition is very important. A lot of people are affected by it.”
How to help
What: Hydrocephalus Association Walk
When: 8 a.m. to 10:30 a.m. Nov. 13
Where: Phoenix Zoo, 455 N. Galvin Parkway near Papago Park
Cost: Free to participate in the walk, but for those who donate $50, they will receive a T-shirt.
Information: www.hydroassoc.org - people can register for the walk the morning of the event or pre-register online.
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This article contains information that has been corrected since its original publish date.