The Chiari Comorbidity Conundrum - Douglas Brockmeyer, MD

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Dr. Douglas Brockmeyer, BJCSF SEA Board member and neurosurgeon at the University of Utah in Salt Lake City, discusses why Chiari can be so complicated and how physicians need to diagnose and treat patients who come into the clinic.

Treating a child's Chiari malformation should be focused on symptoms and quality of life, not just the MRI image. Most diagnosed kids don't need surgery. If surgery is required, it aims to create space for better fluid flow around the brain. Research is ongoing to understand genetic causes and predict surgical success. Early findings show common symptoms include severe headaches and fatigue, with most patients reporting satisfaction after surgery, though some headaches may persist.

Ongoing research is exploring the genetic links to Chiari and developing tools to predict surgical success. It's also recognized that Chiari can coexist with other conditions like Ehlers-Danlos Syndrome. Dr. Brockmeyer highlights that understanding and addressing the patient's symptoms is paramount, and that each patient's experience is unique.

Some of the main points that Dr. Brockmeyer makes are:
There is a lot of variation in the definitions and diagnostics for Chiari malformation, which makes treatment difficult and certainly makes it difficult to teach to new clinicians.
Treatment should not be based on MRI alone, but instead focus on trying to fix the patient's symptoms and improve their quality of life.
Most children diagnosed with Chiari malformation do not actually require surgery, but another type of treatment.
When surgery is necessary, the goal is to create more space to improve cerebrospinal fluid (CSF) flow.
Ongoing research explores genetic causes (chromosomes, growth factors) and develops tools to predict surgical success (Chiari Surgical Success Scale - CSSS).
Before surgery, common symptoms include severe headaches, anxiety, fatigue, and lifestyle disruption.
Most patients report satisfaction after surgery, though some may still experience headaches and we don't know why just yet.
Cognitive improvements are sometimes seen after surgery.
Chiari can coexist with other conditions like Ehlers-Danlos Syndrome (EDS), POTS, and mast cell activation syndrome. This can sometimes complicate teatment plans.
Most importantly, each patient's experience is unique and it's importnt to listen to the patient!

This lecture was presented at a BJCSF patient education meeting at the University of Utah in November 2024.


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