Patients with trigeminal neuralgia often face difficult decisions about imaging, medications, surgery, ablative procedures, recurrence, and long-term pain control. In this AANS/CNS Joint Section on Pain stakeholder conversation, MnDRIVE Neuromodulation Scholar, David Darrow, MD, MPH, and Marshall Holland, MD, speak with Anna Williams, Melissa Baumbick of the Facial Pain Association, and Don Nixdorf, an orofacial pain specialist and member of the Facial Pain Association Medical Advisory Board, about the patient and advocacy perspective on developing surgical guidelines for trigeminal neuralgia. This conversation focuses on what patients need from evidence-based guidelines: clearer treatment pathways, better information about durability, risk, timing between procedures, imaging quality, comorbid conditions, and how to make guideline information accessible to patients and clinicians.
Topics include:
- Why patients want stepwise, evidence-based guidance after diagnosis
- How guidelines can help clinicians and patients discuss treatment options
- Surgery versus ablative procedures
- Microvascular decompression, Gamma Knife, rhizotomy, and repeat procedures
- Treatment durability and recurrence
- When to pause between procedures
- MRI quality, neurovascular compression, and diagnostic uncertainty
- Access to experienced clinicians and high-quality imaging
- Comorbid conditions, whole-patient care, and surgical decision-making
- Registries, minimum data elements, and future research
- Dissemination, patient summaries, and the role of the Facial Pain Association
This conversation focuses on the patient and advocacy perspective: diagnostic delay, treatment burden, medication side effects, recurrence, quality of life, expectations after procedures, and the outcomes that matter most when comparing surgical and procedural options. The goal of this series is to make sure the guideline questions we are putting together are informed not only by clinicians and researchers, but also by patients and advocates with lived experience.
This video is part of a stakeholder-engagement series supporting development of evidence-based surgical trigeminal neuralgia guidelines through the AANS/CNS Joint Section on Pain. The goal is to refine the clinical questions that will guide systematic review and evidence synthesis. This conversation is educational and does not represent final guideline recommendations or organizational endorsement.
