Symptom Trajectories and Postoperative Treatment Response After Surgical Repair of Spinal CSF Leaks

BACKGROUND: To evaluate long-term postoperative symptoms, recovery and treatment responses at least 12 months after surgical repair of spinal CSF leaks in patients with spontaneous intracranial hypotension (SIH) and iatrogenic CSF leaks. METHODS: This cross-sectional, self-report, online survey was conducted from January to April 2025, with participants recruited through international patient support groups. Descriptive analyses included 92 individuals with SIH and 136 with iatrogenic CSF leaks. The questionnaire assessed pre- and postoperative symptoms, functional recovery, complications and the perceived effectiveness of pharmacological and interventional treatments. RESULTS: Among 228 respondents, complete recovery was reported by 13.6% (12/92) of patients with SIH and 5.8% (8/136) of those with iatrogenic CSF leaks. Orthostatic headache showed the greatest postoperative improvement, whereas fatigue, cognitive impairment and tinnitus improved only moderately. The median duration of sick leave was eight months, and 18% of participants remained on medical leave at the time of assessment. Clinician-diagnosed long-term complications were reported by 14.9% of respondents, including peripheral nerve injury. Acetazolamide was the most effective treatment for rebound high-pressure headache, particularly in patients with SIH. Occipital nerve blocks and therapeutic lumbar punctures provided moderate benefit in selected patients, while most other pharmacological treatments showed limited effectiveness. CONCLUSION: Many patients in this self-report cohort experience persistent symptoms years after undergoing surgery to repair spinal CSF leaks. These findings emphasise the importance of structured, multidisciplinary and long-term postoperative care.