Under Investigation

Patients have questions about many lifestyle issues for which we don't have answers yet: roller coasters, weight lifting, exercising at high elevations, etc. Here are some topics that are under active investigation.

Sleep apnea

Lack of oxygen during sleep (hypoxia) caused by sleep apnea can lead to inflammation. Inflammation is known to be a risk factor in cavernous malformation lesion development. Research is ongoing to determine whether having sleep apnea correlates to having a more severe course of cavernous malformation illness.

Researchers are closely examining the relationship between cavernous malformations and sleep apnea. They are conducting a study to determine whether oxygen deprivation caused by sleep apnea is related to the number of lesions found in those with the hereditary form of cavernous malformation. Preliminary studies with mice have shown this may be the case.

Sleep apnea may also play a role in some of the symptoms that CCM patients experience. Experts hypothesize that those with sleep apnea are at a greater risk for CCM symptom exacerbation.

“A lot of the symptoms related to sleep apnea are the symptoms our CCM patients have: headache, fatigue, cognitive issues. If somebody has sleep apnea, then that needs to be taken care of much more aggressively than in the general population” – Dr. Atif Zafar

If you suspect you have sleep apnea, please speak with your doctor or a sleep medicine specialist who can help guide you toward proper diagnosis and treatment. Pulmonologist Dr. Kimberly Foley shares more about the risk factors, diagnosis, and treatment of sleep apnea in her presentation on our YouTube channel.

Botox

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.

Exercise

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.

Updated 3.29.25

References

Frias-Anaya E, Gallego-Gutierrez H, Gongol B, Weinsheimer S, Lai CC, Orecchioni M, Sriram A, Bui CM, Nelsen B, Hale P, Pham A, Shenkar R, DeBiasse D, Lightle R, Girard R, Li Y, Srinath A, Daneman R, Nudleman E, Sun H, Guma M, Dubrac A, Mesarwi OA, Ley K, Kim H, Awad IA, Ginsberg MH, Lopez-Ramirez MA. Mild Hypoxia Accelerates Cerebral Cavernous Malformation Disease Through CX3CR1-CX3CL1 Signaling.  Arterioscler Thromb Vasc Biol. 2024 Jun;44(6):1246-1264. doi: 10.1161/ATVBAHA.123.320367. Epub 2024 Apr 25.

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.