Impact of pain and postoperative complications on patient-reported outcome measures 5 years after microvascular decompression or partial sensory rhizotomy for trigeminal neuralgia

BACKGROUND: Microvascular decompression (MVD) and partial sensory rhizotomy (PSR) provide longstanding pain relief in trigeminal neuralgia (TN). Given their invasiveness, complications can result from such posterior fossa procedures, but the impact of these procedures and their complications on patient-reported outcome measures (PROM), such as quality of life and distress, are not well established. METHOD: Five years after surgery, patients who underwent first MVD or PSR for TN at one institution, between 1982 and 2002, were sent a self-completion assessment set containing a range of PROMs: the Short Form-12 (SF-12) questionnaire to assess quality of life, the Hospital Anxiety and Depression Scale (HADS) to assess distress, and a questionnaire containing questions about postoperative complications, their severity and impact on quality of life. These findings and demographic data were compared between MVD and PSR. RESULTS: One hundred and eighty-one of 245 (73.9%) patients after first MVD and 49 of 60 (81.7%) after PSR responded, and were included in analyses. The mean SF-12 scores of patients after MVD and PSR at five-year follow-up were significantly lower than English age-matched norms. Though there were no differences in SF-12 physical or mental component scores between the two procedures, patients after PSR were more likely to have case-level anxiety (RR = 3.3; 95% CI, 1.1–10.5; p = 0.03), had more postoperative complications, and of greater severity, including pain (RR = 2.52; 95% CI, 1.5–4.1; p < 0.001), numbness (RR = 5.9; 95% CI, 3.8–9.2; p < 0.001), burning sensations (RR = 3.0; 95% CI, 1.5–5.8; p = 0.001) and difficulty in eating (RR = 17.1; 95% CI, 5.6–53.1; p < 0.001), and these had a larger impact on quality of life for PSR compared to MVD. CONCLUSIONS: The quality of life 5 years after MVD or PSR is poorer than in the general population and associated with postoperative complications such as pain, numbness, burning sensation and difficulty in eating. These complications are commoner after PSR than MVD, and this is associated with anxiety in PSR patients at five-year follow-up. However, these differences are not reflected by quality of life scores. Outcome measures need to incorporate patient experience after treatment for TN, and represent patient priorities for quality of life. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s00701-017-3350-6) contains supplementary material, which is available to authorized users.