CSF Pressure and Volume Disorders: SIS Feature

Linda Gray Leithe, MD, discusses her Special Interest Section’s goal of intracranial hypotension and hypertension education

The American Headache Society is home to a diverse array of Special Interest Sections (SIS),  like the Cerebrospinal Fluid (CSF) Pressure and Volume Disorders SIS. The goal of each SIS is to connect members with shared expertise and interests to collaborate on research, develop practice models and provide multidisciplinary participation in support of the Society’s overall mission.

The Cerebrospinal Fluid (CSF) Pressure and Volume Disorders Special Interest Section aims to educate primary care physicians, neurologists and headache physicians on the clinical presentation, diagnosis and treatment of intracranial hypotension and hypertension. Its goal is to promote research for the study of these two disorders.

Linda Gray Leithe, MD, is the Section’s chair. We spoke with Dr. Leithe about the group’s ongoing work and its vision for the future.

Name of Special Interest Section

CSF Pressure and Volume Disorders

Name of Section Chair

Linda Gray Leithe, MD

What’s the mission of the CSF Pressure and Volume Disorders SIS? 

We talk about CSF leaks and high- or low-pressure disorders as a secondary cause of headache. We want to raise awareness about treatment for pressure disorders that cause migraine-like symptoms, spontaneous intracranial hypotension or CSF hypovolemia. We provide resources for physicians and patients on how to recognize the disorder clinically, where to get treatment, how to work up the disorder, and how to provide the best treatment. We had 30 members in our first year. Now, we have 175 members.

What are some of your section’s most recent projects?
We are putting together guidelines for the diagnosis and treatment, the workup, and then—ultimately—the treatment of CSF leaks. There are only maybe four or five different centers in the country that take care of people with this problem, which is not enough. I think it’s a much bigger problem than anyone ever realized. We’ll probably do the same thing for intracranial hypertension. We’ll also be lecturing and meeting twice this spring—once at a symposium on spontaneous intracranial hypotension and then at a conference on high- and low-pressure syndromes. 

What are the long-term goals of the CSF Pressure and Volume Disorders SIS?

We want to create research networks and build a listserv so we can share cases with each other and discuss problems or issues with patients so that we can all be connected. If we had a network like that, then we can do research with that network but also collect patient data and how they present. 

The American Headache Society takes pride in helping to advance research on headache and face pain. We’re grateful to the CSF Pressure and Volume Disorders Special Interest Section for actively working to advance those goals. If you are an AHS member who would like to get involved with this section, get in touch. If you’re not a member, join today.