gms | German Medical Science

Objective: Trigeminal neuralgia (TN) is associated with severe pain and can impact daily functioning and overall quality of life. During the last years many TN Facebook (FB) patient groups have been created worldwide. The aim of this work is to assess the number of neuromodulation-related posts in such groups in Germany.

Methods: “Trigeminusneuralgie” was entered as keyword[VVV1] in the search box and the group tabs were clicked. Only three active private groups could be found. The most recent[VVV2] posts from all 3 groups were evaluated over a time period of two weeks (01.01.2020-14.01.2020).

Results: The three groups included 2603 members. In the mentioned time period, 84 posts and 1348 comments were found. Twenty six posts (31%) mentioned drugs (adverse events, potency), twenty three (27%) were about networking/getting info, twelve (14%) were referring to TN combined with other symptoms (teeth or maxillofacial problems), six (7%) shared social media content (YouTube videos, websites), five (6%) were referring to the Jannetta operation, four (5%) were focused on finding an experienced physician, and seven (8%) were about other topics (menstruation, pregnancy, insurance companies, TENS, acupuncture). Only two posts (2%) mentioned neuromodulation.

Discussion: The main focus of these TN FB groups was on the available drugs and getting more information about the disease/connecting to other TN patients (58%). The Jannetta operation was more frequently mentioned in comparison to neuromodulation as a treatment option. On average, every post was commented by sixteen group members, showing the interaction that takes place within such groups. TN patients were actively seeking information, indicating that the medical community cannot fully address all informational needs of patients with TN.

Conclusions: It is imperative to raise awareness of the role of neuromodulation in treating patients with TN among the world medical community and the general population.