Patient-reported outcomes after surgical treatment of spontaneous intracranial hypotension: a cross-sectional study

BACKGROUND: Spontaneous intracranial hypotension (SIH) can cause substantial functional and psychosocial impairment, but patient-reported outcomes after surgical treatment remain incompletely understood. This study aimed to describe postoperative symptom burden, functional outcomes, psychosocial impact, and headache-related disability in surgically treated patients with self-reported SIH recruited through international patient support networks. METHODS: A cross-sectional online survey (February-April 2025) recruited 92 surgically treated SIH patients via international patient support networks. Variables were obtained by participant report and included comorbidities, surgical characteristics, time metrics, symptom course, psychosocial factors, and HIT-6 scores. Multivariable linear regression was performed to examine factors associated with HIT-6. RESULTS: Median age was 42 years (IQR 38-46), and 88.0% were female. Median time from diagnosis to most recent surgery was 21 months (IQR 13-41), and time since most recent surgery was 20 months (IQR 12-36). Structural abnormalities (e.g., pseudomeningoceles, neo-membranes) were reported by 33.7% of participants. Ventral dural leaks predominated (59.8%), followed by lateral leaks (15.2%) and CSF-venous fistulae (13.0%). Complete symptom resolution was reported by 15.2% of participants. Mean HIT-6 was 56.75 (SD 12.50). In exploratory adjusted analyses, no significant associations were observed between HIT-6 scores and pre-existing headache, number of surgeries, or CSF leak type. CONCLUSION: In this international cross-sectional sample of surgically treated patients with self-reported SIH, a substantial proportion reported persistent symptoms, self-reported rebound intracranial hypertension, headache-related disability, and psychosocial burden. These results suggest a heterogeneous postoperative status and emphasise the importance of structured long-term follow-up.