Are oozing ccm more at risk for hemorrhage?

Discussions of issues related to living with cavernous angiomas

Are oozing ccm more at risk for hemorrhage?

Postby Kenzielee84 » Wed Jan 03, 2018 11:41 pm

My anxiety has been a bit high, thinking about my future and possibly being disabled. I have cavernoma in my pons, mine has oozed 3 maybe 4 times over 12 years. Am i more at risk for hemorrhage? I know noboby knows for sure. Have they done studies on this?
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Re: Are oozing ccm more at risk for hemorrhage?

Postby Michelle2000 » Fri Jan 05, 2018 5:02 am

That is a good question. Lesions can be seen on MRI because they have oozed a bit of blood. Whether or not the oozing has caused symptoms is something patients and their doctors often disagree on. An overt bleed, would likely cause obvious symptoms that the doctor would agree it was causing. Which ones will have an overt bleed is the thing no one understands or can predict.

You can reduce your risk by avoiding blood thinners (won't cause a bleed, but if there is one taking place they could make it worse), not scuba diving, and avoiding blows to the head.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: Are oozing ccm more at risk for hemorrhage?

Postby SeattleCP » Thu Jul 05, 2018 10:52 pm

Thank you for posting your question.

My 2-year-old son has also been diagnosed with a CM in his pons, and we were curious about the same thing. Our neuro team believes his recent event was precipitated by oozing, but they didn’t have much information about the relationship between oozing events and increased risk of hemorrhage. I will continue asking this question to every neurologist and neurosurgeon who sees my son, and will report back if there is ever a confirmation one way or another. My guess is that data is lacking on this point, which is why our doctors so far express uncertainty. Please update us if you hear anything.
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