Mineola pub crawl raising awareness about Chiari
When the coronavirus pandemic canceled the annual awareness walk for Chiari malformation, Amy Hagan of Mineola was especially distraught.
She had participated in the walks since her first surgery in 2013 and was particularly excited about the 2020 version because it was going to be held in nearby Longview. She was planning a big day with family and friends.
But as with many other events in 2020, it was canceled and shifted to a virtual event, with individuals encouraged to come up with their own versions.
One of the suggestions was to walk to a local restaurant and see if they would allow a donation jar to be placed there.
Enter Jason and Holly Herring with Cowburners BBQ and Taproom in downtown Mineola, family friends of the Hagans.
Amy and Holly Herring approached Jason with the idea.
He turned them down – unless they were going to do something big.
From that was born the idea to hold a pub crawl in downtown Mineola on Saturday, Sept. 26 to raise awareness and funds for research for Chiari (pronounced kee-AH-ree).
It is named for the Austrian pathologist who first identified three types in 1891. Two more types have since been identified.
Amy has the first type, which has required three brain surgeries to help alleviate symptoms.
There is no cure, she explains, but successful surgeries can help to lead a somewhat normal life.
Chiari is a structural abnormality at the base of the brain where the opening at the base of the skull is misshapen.
In Amy’s case, her brain is too large for her skull, so it presses down the neck and spinal column.
It is considered to be a congenital defect. It is rare, but is unknown how rare because some with the condition never know it because it is so minor.
In Amy’s case, she was 34 when it became a problem. First it was headaches that began to manifest daily and turned into debilitating migraines.
One thing she learned after meeting other patients is that almost everyone has differing symptoms, and they can be strange.
She has had difficulty swallowing, spasms in the right side of her face, tunnel vision in her right eye, and inability to speak the words she tries to say, much like some stroke victims.
Those differences also make it difficult to diagnose and treat.
Amy’s diagnosis in 2011 came after three or four years of seeing doctors and specialists, including one who thought she was mentally ill, making it all up, and advised her husband he could have her committed.
Even after two MRI’s, which are needed to see the malformation, two doctors missed it before a neurologist in Tyler got it right.
Amy was able to get her headaches stabilized with medication and began preparation for a lengthy brain surgery to help relieve the pressure on the brain.
Admittedly wary of the procedure, she put it off several times until the neurologist finally told her that she had a life-threatening condition and needed to schedule it at once.
That was in 2013, and the results of the 9-hour operation were positive.
Follow up surgeries occurred in 2018 and on July 20 to address specific nerve issues that led to the facial spasms and the difficulty swallowing.
“Right now it seems to be holding,” Amy said. “I am lucky and blessed.”
She just returned to her job full-time last week as a licensed psychiatric associate, which is similar to a physician’s assistant.
After her first surgery, she learned of the advocacy group and immediately got involved. She attended her first Walk Across America in Rockwall and was amazed to see the number of people involved.
Following her initial diagnosis, she knew no one with Chiari.
She was also taken aback by the horrible side of it and what some people were going through – those who can’t walk, can’t drive, can’t hold a job.
She has remained involved ever since, although most of the walks have been outside the area.
She’s excited to be able to share information about Chiari with local residents.
She’ll be answering questions along with a couple other patients.
“I want to see lots of people with smiles and happy and wearing purple (the official color of Chiari),” she said. “Come ask your questions.”
The funds raised go to research so that better treatments can be found, and for more education for doctors to help with the diagnosis.
The pub crawl will be from 4-midnight Saturday, Sept. 26. The south half of the block in front of Cowburners at 109 N. Johnson St. will be closed for the event, and other downtown establishments will also be taking part.
Herring requested the street closure to help with social distancing.
Hagan described living with Chiari as a roller coaster ride, with ups and downs. There are days when it’s tough and days of amazing victories.
“It’s part of my life,” she said. “I have it; it doesn’t have me.”