Current evidence on the efficacy of deep brain stimulation (DBS) for intractable trigeminal autonomic cephalalgias (TACs) is limited and inconsistent, and the evidence on safety shows that there are serious but well-known side effects. Therefore, this procedure should only be used with special arrangements for clinical governance, consent and audit or research.
Clinicians wishing to undertake DBS for intractable TACs should take the following actions:
Inform the clinical governance leads in their Trusts.
Ensure that patients and their carers understand the uncertainty about the procedure's efficacy. They should be specifically informed that DBS may not control their headache symptoms and they should be fully informed about the possible risks associated with the procedure, including the small risk of death. Clinicians should provide them with clear written information. In addition, the use of NICE's information for the public is recommended.
Audit and review clinical outcomes of all patients having DBS for intractable TACs (see section 3.1).
Patient selection for DBS for intractable TACs should be carried out by a multidisciplinary team specialising in pain management.
Further research studies should clearly define patient selection and report the intensity and duration of stimulation, medication use and quality of life, in addition to documenting the effects on headache symptoms as clearly as possible.