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As A CCM Patient Do You Need To Restrict Activities?
There is much controversy as to the restriction of activities when you are diagnosed with CCM and have lesions. Some doctors tell patients that restricting activities is unnecessary. Others say that it makes sense to avoid activities where the risk for head trauma is high -- as in football, soccer, hockey, skiing, etc.
No one really knows how or why these malformations bleed. Many people with multiple CCMs lead normal, active lives. There is some evidence, however, that people with brain stem malformations are much more sensitive to bleeds. Since the brain stem controls motor function and there is virtually no room for the blood to safely go without causing pressure, it is possible that people with lesions in this area are more prone to neurological deficits caused by even the smallest bleed. It is very important to understand that brain stem CCMs can be life-threatening.
It is important to discuss your medical history with your doctor, and make decisions pertaining to activity level based on your condition. It is also very helpful to keep a record of your activities and symptoms to see if there is any correlation between the two.
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