Local Angioma Alliance Get-Togethers

Anyone in central Iowa?

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I just registered here, and do not know anyone who has what we have.  Would love to get together with someone in this area :)
I 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?
i 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?
I 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.
My 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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