The Diagnostic Burden of Spontaneous Intracranial Hypotension: Imaging Volume and Specialists' Involvement prior to...

Spontaneous intracranial hypotension (SIH) is a disabling condition that is frequently underdiagnosed as a result of diagnostic challenges. Delays in diagnosis can be attributed to under-recognized MRI findings or a lack of clinical suspicion, given the wide range of symptoms. This study aims to explore the diagnostic burden of SIH by examining the number of imaging examinations and clinician visits before diagnosis.

This retrospective single-institution study included 71 patients with spinal CSF leaks who had a confirmed diagnosis of CSF-venous fistula (CVF) on digital subtraction myelography (DSM). We reviewed each patient's clinical history, including the number of providers in different specialties and institutions, as well as the number and type of imaging studies performed before the positive DSM at our center. Brain MR images were scored using the Bern criteria, and clinical history, along with imaging data, were compared across Bern groups (low, intermediate, high probability).

The mean patient age was 57.6 years, with most being women (65%). The mean duration of symptoms was 3.8 years, and 14.1% of patients experienced symptoms for ≥10 years before the positive DSM. The mean number of specialists seen per patient was 2.6 (SD: 2.7; range, 0-13), and 28% of patients consulted 4 or more specialists before the positive DSM. On average, each patient underwent 6 imaging studies (SD: 3.8; range: 2-22) before the DSM, including 5.3 MRIs (SD: 3.7; range: 2-22), and 2.5 brain MRIs (SD: 2.1; range: 1-11). The percentage of patients who underwent ≥7 total imaging studies was 40.8%, and 53.5% had ≥3 brain MRIs before diagnosis. Though no statistically significant differences were found in the mean number of specialists or imaging examinations between Bern score groups, a trend of increasing diagnostic burden was observed from the high to low Bern score groups.

Patients with spinal CSF leaks often undergo an extensive number of imaging and specialty consultations, contributing to delays in diagnosis and appropriate treatment. This study highlights the need to increase awareness among health care providers regarding the typical symptoms and imaging features of spinal CSF leaks.