Neuropsychiatric symptoms and clinical characteristics of survivors with colloid cysts.
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BACKGROUND: Colloid cysts are rare, benign brain tumors often located in the third ventricle or near the foramen of Monro. They can evoke neuropsychiatric and physical symptoms including migraine, visual changes, memory loss, and sudden loss of consciousness. They are associated with high mortality due to late moderate-to-severe symptom presentation and limited access to neurological and/or neurosurgical expertise. The Colloid Cyst Symptoms Survey (CCSS) was designed and administered anonymously using REDCap and posted to the Colloid Cyst Survivors Facebook group for 6 months in 2022. The CCSS queried about sociodemographic factors, personal history of a colloid cyst, age of cyst diagnosis, neuropsychiatric and physical symptoms/signs before and after surgery, procedure type if their cyst was removed, and follow-up with neurological, neuropsychiatric or psychological services. Psychiatric symptoms within the last two weeks were assessed using the DSM-5 Self-Rated Level 1 Cross-Cutting Symptom Measure-Adult assessing 13 psychiatric domains (American Psychiatric Association). RESULTS: Participants included 225 adults who were U.S citizens with a personal history of a colloid cyst. The majority were female (71.3%) and White (94.0%). Age of diagnosis occurred between 12 and 75 years old, median age 42 years. On average, patients reported 2 pre-clinical symptoms leading to diagnosis, most commonly migraine (48.9%) and aura (30.7%). Hydrocephalus was reported by 56.9%. In patients who underwent surgical removal of their colloid cyst, craniotomy (53.9%) was more common than endoscopic removal (42.6%). Common conditions and physical complications persisting after surgery included changes in energy level (N = 68), memory problems (N = 71), and anxiety (N = 46); higher prevalence of post-surgical complications were observed in the hydrocephalus and craniotomy groups. The DSM-5 screener identified areas of concern including memory, anxiety, somatic symptoms, sleep difficulties, anger, depressive symptoms, suicidality, and substance use. Despite this only ~ 1/10 patients received follow-up with psychiatrists or psychologists. CONCLUSIONS: To our knowledge this is the largest cross-sectional study querying clinical characteristics among colloid cyst survivors. Persisting neuropsychiatric symptoms were reported to be high. People experiencing brain surgery, even for benign tumors, need to be assessed for neuropsychiatric morbidity.