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Prospective untreated outcomes in patients with cerebral cavernous malformation
Kelly D Flemming1, Delal Bektas2, Robert D Brown1
11Department of Neurology, Mayo Clinic, Rochester.
Journal of Neurosurgery
|March 27, 2026
Summary
Most patients with cerebral cavernous malformation (CCM) improve after initial hemorrhage, but disability increases with subsequent events. Brainstem location and multiple hemorrhages are key risk factors for long-term morbidity.
Area of Science:
- Neurology
- Neurosurgery
- Medical Genetics
Background:
- Cerebral cavernous malformations (CCMs) are vascular anomalies that can lead to neurological deficits.
- Long-term outcomes and risk factors for disability in untreated CCM patients are not fully understood.
Purpose of the Study:
- To determine the long-term morbidity and disability risks associated with untreated cerebral cavernous malformations.
- To identify predictors of disability in patients with CCM.
Main Methods:
- Prospective cohort study of 332 patients with CCM.
- Functional outcome assessed using the modified Rankin Scale (mRS).
- Kaplan-Meier curves and Cox proportional hazards models used to analyze time to disability and risk factors.
Main Results:
- Most patients showed improvement in mRS scores within the first year post-hemorrhage.
- The 5-year and 10-year disability risk for brainstem CCMs was 18.8% and 35.4%, respectively, versus 4.1% and 7.5% for non-brainstem locations.
- Predictors of disability included brainstem location, history of psychiatric disorder, and two or more symptomatic hemorrhages (SHs).
Conclusions:
- Functional outcomes generally improve after the first symptomatic hemorrhage, particularly within the first year.
- Disability risk escalates with each subsequent symptomatic hemorrhage.
- Key factors predicting long-term disability include brainstem CCM location, multiple hemorrhages, and a history of psychiatric disorder.

