BRAINSTORM: ‘Invisible’ brain disorder patients finding solutions at Aurora institute

Dr. Colin Buchanan goes over X-rays with patient Allison Reed, Sept. 28 at the Colorado Chiari Institute in Aurora. Dr. Buchanan executes approximately 50-75 surgeries a year correcting Chiari malformations. Photo by PHILIP B. POSTON / Sentinel Colorado. AURORA | Growing up, Allison Reed thought the shooting pain she experienced whenever she laughed, coughed or sneezed was nothing to worry about.

The pain raced down her neck and back. Since no one could explain the symptoms, she tried her best to shrug them off.

“You kind of think to yourself, maybe it’s normal,” Reed said. “Maybe everybody feels this level of pain when they’re coughing or laughing.”

In 2013, the Longmont mother of three suffered a head injury, and began experiencing migraine headaches that were not as easy to ignore.

An MRI of her injury showed that she also had a Chiari malformation — a developmental disorder that causes part of the brain to protrude out of the gap between the skull and the spine — but since her doctors were unfamiliar with the problems caused by the condition, they did not make a connection at the time between Reed’s headaches and her Chiari.

In 2022, Reed experienced two concussions back-to-back, and the once-occasional migraines turned into a nonstop barrage of debilitating neurological symptoms.

She was constantly nauseous and stopped eating, losing about 50 pounds. The pain in her head, neck and shoulder made it hard to sleep. She would stutter and hiccup uncontrollably, and she began to develop memory problems and had difficulties walking and swallowing.

The problems escalated to the point that she was forced to quit her job providing respite services for people with disabilities.

“I would almost compare it to having a brain injury,” she said. “I was so forgetful, and just so out of it, and I couldn’t function. I slept all the time, and I’m a mom of three. I can’t sleep all the time. I have to get up and take care of my kids…I couldn’t survive, and I kept trying to get help, and I kept getting turned away.”

Reed went to the emergency room, saw multiple doctors and was prescribed medication for her headaches. The symptoms continued and grew worse.

She said it was ultimately social media that led her to information about the effects of Chiari malformations and the Aurora practice of neurosurgeon Colin Buchanan, who leads the Colorado Chiari Institute at the Medical Center of Aurora.

Buchanan is one of a small number of surgeons in the region who specializes in treating Chiari malformations, and the Colorado Chiari Institute is similarly unique for its focus on a brain disorder that is widely known but not well understood by many medical practitioners.

Buchanan operated on Reed in February, removing one of her spinal vertebrae and inserting a metal plate in a procedure known as Chiari decompression surgery. Since then, Reed said her headaches and other symptoms have only improved.

“The biggest thing that I cried about and was shocked about was that I could feel each of my fingers, and I could feel my toes,” she said. “It’s completely changed my life. I’m able to go back out and be active again. I’m able to go hiking. I’m able to keep up with my kids. And that’s all because he knew how to treat this.” Dr. Colin Buchanan points to the location of a Chiari malformation on an X-ray, Sept. 28 at the Colorado Chiari Institute in Aurora. Chiari care gets a home in Colorado

In the early 2000s, neurosurgeon John Oro established the Colorado Chiari Institute at the Medical Center of Aurora, focusing on the brain disorder that is estimated to impact about 0.1% of the U.S. population, according to the American Association of Neurological Surgeons.

Many of those people don’t go on to develop symptoms. But for others, the pinching of the exposed section of brain between the skull and spine causes a buildup of fluid in the spinal cord as well as symptoms that can be crippling.

Buchanan said Oro’s work with Chiari patients inspired him to join the clinic. Oro has since retired, and for the past year, Buchanan has been the institute’s sole neurosurgeon.

“At the moment, we’re one of two or three centers like this in the U.S.,” he said. “What we’re trying to do is offer expertise in a condition that affects more people than we think. And we’re trying to take an approach that’s comprehensive and not just ruling people in or out for surgery. We’re trying to help guide people through this process, and educate them, and help them determine a treatment plan that makes sense for them. And that may or may not include surgery.”

Buchanan said the treatment options presented to patients depend on the presence of fluid-filled cysts called syrinxes on the spinal cord, which are caused by the blockage of spinal fluid. He said the condition can inflict permanent neurological damage if left unchecked.

For patients who don’t have a syrinx, he said non-surgical treatments such as physical therapy and botox injections can help manage the symptoms of Chiari. But for patients with a syrinx, Buchanan said he believes there “isn’t an acceptable alternative” to surgery.

After years of dealing with symptoms that had forced her to quit her job and impacted her ability to be present with her children, Reed said she was relieved when Buchanan recommended decompression surgery.

“It’s what I was hoping for,” she said. “I knew I needed it. And I felt like I won the lotto when he told me that I got to have brain surgery, which I know sounds crazy, but that’s where I was at. I hugged him because I was just so grateful that he was willing to treat me and take me on as a patient.”

Buchanan, who said he’s on track to perform between 50 and 75 decompression surgeries this year, also said Reed wasn’t alone in struggling to find medical professionals who understood the ins and outs of Chiari.

“I think it requires some exposure to this to understand what Chiari means for patients,” he […]

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