Q&A with Brian Dlouhy: Bringing clarity to Chiari
Neurosurgeon Brian Dlouhy, MD, explains how Chiari malformations can be mistaken for more common issues, delaying diagnosis and treatment—and why more awareness and research are key to improving care.
Brian Dlouhy, MD, a neurosurgeon at University of Iowa Health Care who specializes in Chiari malformation and complex craniovertebral junction abnormalities, has seen firsthand how these conditions can impact lives—from babies to seniors.
Chiari malformations are a group of conditions that affect the brain and spinal cord. They occur when the brain doesn’t fit properly within the skull, forcing some brain tissue to drop down into the spinal canal. Some people with Chiari malformation also develop a chronic disorder called syringomyelia when cerebrospinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx.
Dlouhy estimates that Chiari malformation may affect 2 percent to 4 percent of the population, but the condition can be overlooked due to its varied and sometimes subtle symptoms, which can include headaches, muscle weakness, difficulty swallowing, and balance issues.
As this year’s host of the American Syringomyelia & Chiari Alliance Project (ASAP) annual conference, he’s looking forward to connecting leading experts and patients to raise awareness about these conditions, foster collaboration, and highlight the latest advancements in care.
What do you wish more people understood about Chiari malformation and related conditions?
Many people don’t realize how subtle and chronic the symptoms of Chiari malformation and syringomyelia can be. Patients often endure headaches, swallowing difficulties, balance issues, or musculoskeletal pain for years—sometimes their entire lives—without knowing these symptoms aren't normal. Because they’ve lived with these sensations for so long, they may not report them unless specifically asked, and as a result, these conditions can be misdiagnosed or overlooked. Greater awareness among both patients and providers is critical to recognizing and addressing these disorders earlier.
How has the knowledge about these conditions advanced through the years, both in research and clinical care?
We've made significant progress in understanding the underlying pathophysiology of Chiari malformations and related disorders. At institutions like the University of Iowa, large, meticulously collected case series have deepened our insights into symptom presentation, surgical outcomes, and long-term management. Advances in neuroimaging, clinical assessment tools, and patient-centered outcome studies have enabled more precise diagnoses and personalized treatment approaches. Ongoing research continues to refine our understanding and improve quality of care.
Why are symptoms often misunderstood or dismissed?
Symptoms can be mistaken for more common conditions like migraines or anxiety, leading to misdiagnoses and delayed treatment. It's essential for health care providers to maintain a high index of suspicion, especially when symptoms are persistent and unexplained. Because symptoms like headache, dizziness, neck pain, or swallowing difficulties can be non-specific and long-standing, patients often normalize them. When someone has lived with these problems for years, they may not realize they’re abnormal or connected to a neurological issue.
What are you most excited to share at this year’s conference?
I’m excited to bring together experts and patients to discuss the full spectrum of complex conditions affecting the craniovertebral junction. This includes Chiari malformation, syringomyelia, tethered cord syndrome, craniocervical instability, Ehlers-Danlos syndrome (EDS), and other connective tissue disorders. Having all these topics addressed in one comprehensive meeting allows for a collaborative, multidisciplinary approach that benefits both research and patient care.
How do patient voices and experiences shape approaches to care and research?
Patients are central to everything we do. Every individual experiences Chiari or syringomyelia differently—there is no one-size-fits-all symptom profile or treatment plan. By listening closely to their stories, we gain insights into the real-life impact of these disorders, which guides both clinical decision-making and research priorities. Patient-reported outcomes, quality-of-life measures, and anecdotal experiences help us shape care plans that are truly individualized and compassionate.
For families navigating a new diagnosis, what guidance or reassurance would you offer as they begin this journey?
First and foremost, know that you’re not alone. We, as neurosurgeons and health care providers, are here to listen, guide, and support you every step of the way. These conditions can be overwhelming, but with the right team and a personalized approach, there are effective treatments and strategies available. Our goal is to improve quality of life—through education, expert care, and partnership with patients and families.
ASAP Conference (American Syringomyelia & Chiari Alliance Project)
Join Brian Dlouhy, MD, neurosurgeon at University of Iowa Health Care, and other national experts for the 2025 ASAP Conference (American Syringomyelia & Chiari Alliance Project) on July 21-24 in Iowa City, Iowa.
This unique event brings together patients, families, and medical professionals to share the latest in research, treatment, and support for Chiari malformation, syringomyelia, and related conditions.
Why Iowa City?
University of Iowa Health Care is a leader in neuroscience, known for:
- Pioneering surgical approaches for Chiari and craniovertebral junction (CVJ) disorders
- Over 150 scholarly articles, contributing greatly to the understanding of these conditions
- Specialized care for pediatric and adult patients
Details & registration:
https://asap.org/conferences/2025-conference/
Who can attend?
- Adults and children are welcome
- Family and single-day registration options are available
- Free for medical professionals (with medical identification)
