Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
Cavernomas are vascular lesions found in the CNS and other parts of the body. They are characterized from other vascular malformations by the lack of intervening brain tissue between the vessels. Whenever a cavernoma is identified, the benefit of intervention must be weighed against the risk. The natural history of cavernomas is difficult to predict. Some have suggested restricting activities while, as you know, others have not. Ultimately, it will be a decision between you and your neurosurgeon. Other considerations to include are: 1) is this a single cavernoma or are there others, 2) do you have symptoms from the cavernoms, and 3) has the cavernoma ever bled before. These questions may influence the decision as to your activities and management.
I suggest you discuss your concerns with your neurosurgeon. Also, as the poster prior to me indicated, finding online communitiies would help with reassurance and providing further information.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
I also have cavernous angiomas, and we have a very active forum of individuals on the http://www.angioma.org web site. Many are still doing their sports, others have stopped. There are no indications that higher blood pressure could lead to problems like bleeding of the cavernoma, but there have been several cases where people have indicated that there bleed started after vigorous activity like sports. Recommended activities to stay away from are: Roller coasters, scuba diving and certain positions in yoga, where too much blood would flow to the brain. Otherwise I would suggest take it easy, don't overdo yourself. Moderate exercise would be good. As for other recommended activities: avoid aspirin, ibuprofen and advil as they are blood thinning. other meds that can cause problems and should be avoided are the NSAIDs or anti-inflammatory meds. Even foods and food supplements like high volumes of vitamin E could cause blood thinning and should be avoided. If you have more questions, join our forum and ask away. http://www.angiomacommunity.org/forum/
Good Luck and Take Care,
Henk van der Wilt
Angioma Alliance Canada
Thank you really! I am getting used to this condition. I've been a very active person. These conditions for sure let us down. It was a surprise for me.
My neurosurgeon (the third), as I've said above, indicated there are no problems with the left lobe cerebellar cavernoma (I have the only one cavernoma so far) because its confined in the cerebellum, and he told me to keep a normal life. However, cerebellum size may change if the cavernoma increases its size. A very small bleed was observed but almost unnoticeable. Surgery is an option but it has a risk of damaging left cerebellum lobe and let me with movement impairment (lack of precise moves) in my left side for months.
If I remember well, cerebellum has more neurons than the entire brain (20+ billion neurons), most of them used for precise movement and reactive movement (e.g. avoiding to be hit by your own hand).
This cavernoma was my first diagnosis, with a tomography and MRI, so the Doc doesnt know what caused it and he recommends to observe the cavernoma with new Doppler exams, every year.
Extremme / intense activies can really be a problem (e.g. jogging until the heartbeat nears 200bpm, like trying to be Asafa Powell). I dont like overdoing like that anyway. Also, Doc said that stress events needs to be avoided. Ansyolitcs, moderate wine or even fitoteraphics like valeriana was recommended by him to keep calm in stressful events (ONE of them, not all at the same time). Alcohol may let some cavernomas more prone to bleed, but may not do any harm in terapheutic doses.
For about the cure, there are cases that cavernomas was drammatically reduced without a removal surgery (like a case with a woman with cavernoma in the pons area).
Be it miracle or health habits, we must have faith.