Objective: The rise of social media has allowed for individuals and patients to connect with each other and influence patient behavior. This study aimed to improve our understanding of the patients’ experience with cerebral cavernous malformations (CCM) via social media. Methods: Instagram and Twitter were searched using terms of (“cavernoma”, “cavernous malformations”, “cavernous angioma”, or “cav mal”). Public Instagram posts tagged with “#cavernoma” and “@cavernoma”, identified 327 posts that directly included a patient’s own experience. Twitter posts that included “#cavernoma” and “@cavernoma” was searched yielding 75 after eliminating those that did not pertain to the patient’s own experience. The posts tweets were coded for the relevant themes related to their experience with the disease. Results: Overall more patients are using Instagram (n=327) over Twitter (n=84) to share their personal experience with CCM with a trend for male patients to use Twitter more compared with female predominance in Instagram. A total of 277 out of 327 (84.7%) Instagram posts and 67 of 84 (89.3%) Twitter posts were made after the patient’s surgery. The most common theme in Instagram was focused on the post-operative rehabilitation process and mobility support (52.0% and 24.5%, respectively). Other common themes present on Twitter and Instagram were recounting symptoms and complications and life satisfaction (26.0% and 24.2% respectively). Cavernoma patients prior to surgery were more likely to discuss on Instagram their symptoms (p = 0.001), fear of bleeding (p < 0.001), and mental health (p = 0.014). Post-operatively, cavernoma patients were more likely to discuss being in a wheelchair than they were pre-operatively (p = 0.001). Conclusion: Social media platforms offer a communication tool for patients with CCM patients to share their experience with other patients and the general public and portrays their personal experience with CCM. These platforms allow for physicians to better understand the patient experience following cavernoma surgery.

Introduction Social media serves as a way for patients to post about their condition online, as well as for healthcare providers to disseminate information. Intrinsic bias exists exist when patients are given surveys by physicians or healthcare providers. We aim to investigate patient-centered social media posts regarding cerebral aneurysms on Instagram, Twitter, and TikTok. Methods Posts that included “brain aneurysm”, “#brainaneurysm”, “#brainaneurysmsurvivor”, and “#aneurysmsurvivor” were queried on Instagram, Twitter, and TikTok. Any posts unrelated to the patient experience were excluded. Five hundred and fourteen Instagram posts, fourty tweets, and five hundred seventy three TikTok posts about the patient experience were identified. Posts were coded for the relevant themes related to their experience with the disease. Results Most posts made online were by women (892, 82.1%). Patients made the post most of the time (776, 67.5%), while other individuals posted less often (420, 36.5%). The most common themes on Instagram were survival (475, 87.3%), spreading positivity (385, 70.77%), and recovery/rehabilitation (329, 60.5%). TikTok users most often referred to survival (573, 97.1%), raising awareness (464. 78.6%), and spreading positivity (414, 70.2%). Patients were more likely to discuss pre-operative pain (p = 0.0382), postoperative pain (p < 0.0001), invisible illness (p = 0.0130), humor (p = 0.0028), recovery (p < 0.0001), angiograms (p < 0.0001), and resiliency (p < 0.0001) when compared to other individuals posting about a patients' experience. Conclusion Patients often focus on different aspects of their care than do other individuals. This may be useful for physicians discussing treatment plans and prognoses with the patient and their families.

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