Onoichenco Amanda, Dhallu Tanveen, Kabariti Sarah, Li Qiushuang, Harter David, Pillai Cinthi, Snyman Claire, Yucel Recai, Gustafson Deborah
College of Medicine, State University of New York Downstate Health Sciences University, Brooklyn, NY, USA.
Department of Neurology, State University of New York Downstate Health Sciences University, 450 Clarkson Avenue, Brooklyn, NY, 11203, USA.
Orphanet J Rare Dis. 2025 Aug 11;20(1):420. doi: 10.1186/s13023-025-03905-y.
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).
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.
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.
胶样囊肿是一种罕见的良性脑肿瘤，通常位于第三脑室或Monro孔附近。它们可引发神经精神和身体症状，包括偏头痛、视力变化、记忆力减退和意识突然丧失。由于症状出现较晚且从中度到重度，以及获得神经科和/或神经外科专业知识的机会有限，它们与高死亡率相关。胶样囊肿症状调查（CCSS）于2022年设计并使用REDCap进行匿名管理，并在胶样囊肿幸存者脸书群组中发布了6个月。CCSS询问了社会人口统计学因素、个人胶样囊肿病史、囊肿诊断年龄、手术前后的神经精神和身体症状/体征、囊肿切除的手术类型以及神经科、神经精神科或心理服务的随访情况。使用DSM-5成人自评一级交叉症状测量量表评估过去两周内的精神症状，该量表评估13个精神领域（美国精神病学协会）。
参与者包括225名有个人胶样囊肿病史的美国公民成年人。大多数为女性（71.3%）和白人（94.0%）。诊断年龄在12至75岁之间，中位年龄42岁。平均而言，患者报告2种导致诊断的临床前症状，最常见的是偏头痛（48.9%）和先兆（30.7%）。56.9%的患者报告有脑积水。在接受胶样囊肿手术切除的患者中，开颅手术（53.9%）比内镜切除（42.6%）更常见。手术后持续存在的常见情况和身体并发症包括能量水平变化（N = 68）、记忆问题（N = 71）和焦虑（N = 46）；脑积水和开颅手术组术后并发症的患病率更高。DSM-5筛查工具确定了需要关注的领域，包括记忆、焦虑、躯体症状、睡眠困难、愤怒、抑郁症状、自杀倾向和物质使用。尽管如此，只有约1/10的患者接受了精神科医生或心理医生的随访。
据我们所知，这是对胶样囊肿幸存者临床特征进行询问的最大规模横断面研究。报告显示持续存在的神经精神症状发生率很高。即使是接受良性肿瘤脑部手术的人，也需要评估其神经精神发病率。
