Black Elk Coffee Bar owner Ashton Howard, who will be 20 later this month, has suffered from the symptoms of a spinal condition for years, maybe even most of his life, without knowing the cause. His family and friends are working to raise money for the surgery he needs. (File photo)
To put it simply, Ashton Howard’s spine is either too long or his spinal cord is too short. Whichever way you want to look at it, though, the young La Cygne entrepreneur suffers from severe headaches, neck pain, dizziness and occasional brain fog caused by his spinal cord literally trying to pull his brain down from his skull.
The owner of Black Elk Coffee Bar in La Cygne has been experiencing symptoms of what is known as Chiari malformation type 1. As the spinal chord works to pull the brain downward, it reduces the flow of spinal fluid up and around the brain, according Frankie Elder-Reedy, Howard’s mother.
After many years of putting up with the symptoms, including while he was a student at Prairie View High School, he received a correct diagnosis of the problem courtesy of a concussion he suffered in 2021 while playing football in his senior year.
In an attempt to find the cause of Howard’s ongoing symptoms, Pleasanton chiropractor Chase Carpenter had ordered a magnetic resonance imaging (MRI) in 2016, but the report on the results was inaccurate. Following the concussion five years later, Carpenter ordered another MRI after Howard wasn’t recovering very quickly.
Using those results, Carpenter was able to make the correct Chiari malformation diagnosis. Elder credits Carpenter’s diligence looking for the cause as a major step forward in correcting it.
Chiari malformation isn’t an uncommon condition. According to Elder’s research, one in every 1,000 people are affected by the condition, and many people may go through life just putting up with the symptoms that aren’t caught unless they have an occasion to get an MRI.
Here is a link to an explanation of Chiari malformation on the Mayo Clinic website.
Since the diagnosis, Elder has buried herself in researching the condition that also has common symptoms of memory difficulties, weakness and numbness.
Their research has led them to discover that a common procedure used to treat the problem in the United States likely is not the best long-term solution. The common operation in this country includes cutting away part of the skull and cauterizing parts of the brain to allow space for the spinal fluid to flow.
Her research also led her to discover an alternative surgery: loosening a ligament at the base of the spine which relieves the pulling of the spinal chord on the brain, thus allowing the brain to remain inside the skull without shutting down the flow of spinal fluid.
For Elder and Howard, the surgery to cut away part of the skull seemed more risky, and according to their research, doesn’t alway provide a long-term cure to the condition. It also requires a lengthy recovery.
Loosening the ligament, on the other hand, is less invasive, has a shorter recovery period and consistently provides long-term relief to the problem, Elder said.
It would be a simple choice if the alternative surgery was available in the states, but it’s not. To have that procedure done, Howard will have to travel to Barcelona, Spain.
“I've learned of so many people who have had the decompression surgery here in the states who had some relief for a period of time only to have their symptoms return and often worsen,” Elder said. “This makes sense if the cause is at the base of the spine. If the cause hasn't been addressed, the tension remains and the brain gets pulled down into the space that was created by removing part of the skull.
“I've read stories about people who have had the decompression surgery four times. How much of their skull can they have removed? It seems as though the surgical option in the U.S. only treats symptoms with a brutal and what I would consider barbaric surgery.”
That sent her into doing more research. Often, that research yielded conflicting information.
“I'm so happy to have learned about the surgery in Spain,” Elder said. “I found out about it from reading a post in a support group on Facebook. I've found communicating and staying connected with people who have or are going through this to be tremendously helpful as we have been told conflicting information from two different neurosurgeons we've seen here in the U.S.”
Elder is herself an entrepreneur who is also the organizer for Grady’s Kids, an organization named after her late father PVHS art teacher Grady Elder that has raised more than $100,000 to help Linn County children and families in need.
It’s not surprising that Howard’s medical insurance won’t cover the procedure in Spain, much less the travel costs and the living expenses while he is there. Elder said that even the initial MRIs and X-rays taken from the top of his head to the base of his spine that are required by the Spanish physician weren’t covered.
He is expected to be in Spain two weeks, beginning with an initial consultation, then the surgery and a follow-up exam 10 days post-op.
To help covers the costs for the procedure, Shelly Mulani Bales, an artist who graduated from PVHS and who also has suffered from Chiari malformation, is hosting a paint party in La Cygne on Sept. 14 for 35 people. Bales recently illustrated a children’s book that Elder authored.
Another family friend, Becky Clear, has created a gofundme.com webpage to take donations for Howard: https://www.gofundme.com/f/ashton-howard-and-frankie-could-use-our-help.
As of Sept. 5, nearly $3,300 of the $30,000 needed for the travel and surgery has been raised.
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