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.”
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 said. “There’s an awareness of Chiari as a disease, but I don’t think it’s really well understood. And sometimes the symptoms that people have are attributed to just having a headache and, you know, take some Tylenol and ibuprofen, and it’ll get better. And that’s not the case here.”
Rick Labuda — a Chiari patient himself and the executive director of Pennsylvania-based educational nonprofit Conquer Chiari — said patients often have a hard time getting an accurate diagnosis for the spectrum of symptoms associated with Chiari, which can include everything from splitting headaches to trouble swallowing and balance problems.
Once diagnosed, patients outside of large metropolitan areas may also struggle to find a neurosurgeon who has performed a large number of Chiari surgeries, Labuda said. While he said decompression surgery should be within the comfort zone of any certified neurosurgeon, only a handful of surgeons and facilities market themselves specifically to Chiari patients.
A survey by Conquer Chiari of 1,576 adult and juvenile Chiari patients indicated that about 75% of patients who underwent surgery reported some improvement in symptoms, with about 43% reporting a total or “significant” reduction and 78% saying that, knowing the outcome, they would go through with surgery again.
According to Buchanan, about 80% of patients who received decompression surgery through the Colorado Chiari Institute have reported a significant reduction in their Chiari symptoms. Buchanan said patients typically begin seeing a reduction in their symptoms within one to two months, with the full results of the surgery sometimes taking a year or more to manifest.
Labuda said children tend to recover more quickly from the surgery and that it took him about a decade to feel the full benefits of his own decompression surgery.
He said that, while he personally would seek out a surgeon who has done a large number of Chiari surgeries, other patients might prioritize finding a surgeon with a good bedside manner or look for other qualifications.
“We feel that it is critical for patients to educate themselves, and to be in charge of their own journey,” he said.
Dorothy Poppe — the executive director of another nonprofit that supports Chiari research, the Bobby Jones Chiari and Syringomyelia Foundation — said the landscape of care for Chiari patients differs depending on where patients live. She described the Colorado Chiari Institute as “one of the only treatment centers” in the region.
She said awareness of the condition has improved since the 1990s, when her young son was diagnosed with Chiari and the related condition of syringomyelia.
“(MRI) was this brand new technology when my son was getting treated. And now it’s improved so much, and it’s everywhere, whereas at that time it wasn’t everywhere,” Poppe said. “At that time, there were very few neurosurgeons who were even interested in Chiari, and I think part of that interest came after you could actually see it on an MRI.”
Mystery solved
Another Colorado Chiari Institute patient, Hannah Jane, first went to the emergency room in 2018 when she began experiencing symptoms of vertigo. The doctors there suggested she was suffering from a migraine headache and discharged her.
But she said her illness only progressed, growing to encompass “pretty much every single symptom Chiari has to offer.” Over the next few years, she continued to seek out doctors and surgeons who also attributed her dizziness, balance problems and numbness in her arms and legs to migraines.
“One doctor told me that she didn’t even know what to do with me anymore because they just couldn’t find any answers,” Jane said.
The symptoms also impacted her ability to work as a fashion designer. Jane learned to sew at age 8 and turned her love of clothing and fashion into a career and artistic outlet as an adult. She said Chiari turned the work that she was passionate about into an uphill battle.
“I was so fed up with my life. I had no life,” she said. “I was doing something I loved, but I didn’t feel good doing it. Things that would maybe take me an hour before could take me 24 hours, or something that I could do in a day would take me a month.”
In 2020, a physician finally suggested she seek care through the Colorado Chiari Institute. When several months of medication and other treatments failed to improve Jane’s symptoms, the staffers at the institute agreed to perform decompression surgery. Jane wanted the surgery, but she still had reservations.
“I felt like I was going into it unsure if it was going to work. But they were wonderful,” she said. “They were so supportive of my hesitation. We actually went through multiple meetings where they went through everything, and they just tried to calm my nerves, and make me feel supported, because it’s not every day you make the choice to have brain surgery.”
Since her surgery in June 2021, Jane’s symptoms have improved. Like Reed, Jane’s constant nausea kept her from eating. When Jane woke up after her operation, she said she was “starving,” and she could again feel her arms and legs.
Other symptoms, like the vertigo she started experiencing in 2018, haven’t gone away completely, but are more manageable than they were in 2021.
Many of the new pieces of clothing produced by Jane include the motif of a butterfly, symbolizing her triumph and the triumph of other patients over Chiari. And she said the support she’s received from the institute has helped her overcome the symptoms that she continues to struggle with.
“I think that the surgery and having them available definitely impacted my life because I felt heard, and I felt like I had a space that was safe,” she said. “And I think one of the hardest things in the medical industry, especially with an invisible illness, is trying to find people who understand exactly what you’re going through.”
Buchanan said he sees the Colorado Chiari Institute as a vehicle for supporting Chiari patients, not only by offering treatment but also by providing a tangible explanation for symptoms that can change the course of patients’ lives.
“By the time they see me as a specialist, it’s often quite a relief for them to hear that there’s a diagnosis that explains what they’ve been going through, and there’s a reason for all of this stuff,” he said. “It’s pretty powerful. They feel validated.”