1: Tue Oct 06, 2009 2:39pm impishI just registered here, and do not know anyone who has what we have. Would love to get together with someone in this area
2: Fri Oct 16, 2009 1:36pm KRandallI was diagnosed on Monday with a Cavernous Angioma in the Pons of my Brainstem. Still a little freaked out about the whole thing. How long have you had your Angioma? When you say central Iowa, where specifically are you at?
3: Fri Oct 16, 2009 5:17pm impishi was diagnosed with a venous angioma 5 years ago, but a month or so ago....they told me it had an associated cavernous angioma that had been there all along. 3 bleeds so far, one from the venous angioma and two from the cavernous angioma. And all this time they were telling me that the venous angioma was nothing. Less than 2% chance of bleed in any given year. Well...now I know. Mine is in between the temporal and frontal lobe. Im sorry you have joined our club. May they find a cure. I am in Des Moines, Iowa area. Where are you?
4: Fri Oct 16, 2009 9:39pm KRandallI live in Iowa City, but work in Hampton several days a week. Where are you receiving your care? So far, I've been at UIHC, but am looking around for where they may have a little better understanding of this Cavernous Angioma critter in my brain.
5: Sat Oct 17, 2009 1:39pm impishMy neurologist is at Mercy in Des Moines. I havent seen a neurosurgeon or found out whether surgery is an option. My next appt is in Dec and I am going to ask him how many people with angiomas he has treated. (If I remember) LOL memory has been issue lately.
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