Headache is the most common symptom reported by those with cavernous malformation. Botulinum toxin (Botox) is an FDA approved treatment for chronic migraines and may be offered to some patients as an option for relief. While the safety of using Botox if you have cavernous malformation is unknown, a 2020 paper provided details of a case study of an individual who experienced two symptomatic hemorrhages following high doses of Botox. Until more is understood in this area, it is recommended to explore all of your treatment options for headache with a practitioner who is well-versed in CCM.
Individuals with cavernous malformation can engage in aerobic activity and noncontact sports. A 2020 study completed at Mayo reported that these activities have not been shown to increase hemorrhage risk. Less is known about contact sports, high-altitude climbing, scuba diving, and those with spinal-cord cavernous malformation.
A study published in 2020 examining predictors of hemorrhage found that 26.2% of women who presented with a hemorrhage were taking a form of estrogen therapy (i.e., oral contraceptive, hormone replacement). This risk appears to be greater in those with sporadic lesions possibly due to thrombosis in an associated DVA causing blood to back up placing the vessels at risk for hemorrhage. This is an important finding that warrants further research using larger cohorts before strong recommendations can be made about any risk of estrogen use in CCM patients. There may also be genetic differences (genetic modifiers) between women who are most at risk for hemorrhage when taking estrogen versus those who appear to be at a lower risk.
Koskimäki J, Zhang D, Carrión-Penagos J, et al. Symptomatic Brain Hemorrhages from Cavernous Angioma After Botulinum Toxin Injections, a Role of TLR/MEKK3 Mechanism? Case Report and Review of the Literature. World Neurosurg. 2020;136:7-11.
Joseph NK, Kumar S, Lanzino G, Flemming KD. The Influence of Physical Activity on Cavernous Malformation Hemorrhage. J Stroke Cerebrovasc Dis. 2020;29(4):104629.
Flemming KD, Kumar S, Brown RD Jr, Lanzino G. Predictors of Initial Presentation with Hemorrhage in Patients with Cavernous Malformations. World Neurosurg. 2020 Jan;133:e767-e773.