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AVM Survivors Network

2-3 mm pAVM?

#1

Has anyone had a pulmonary AVM embolized that was less than 3 mm? Mine looks to be between 2-3 mm, so I’m waiting on another opinion. I am leaning toward having it done if given a choice. Has anyone been in a similar situation? I’ve found a little info online, but I’d like to hear from personal experience, if possible. (Just found out I have HHT a month ago.) Thanks!

#2

Hi,

I had a PAVM that was 2.5 cm. My doctors were not sure of what it was at the time it was discovered. I eventually underwent a lung biopsy because the mass was wrapped around my wind pipe in my lung. The surgery removed the AVM and I was diagnosed with an AVM. Mine did not rupture and they felt it had been there for a long time. I now have to have a ct scan once a year. I’m not sure if this helps but mine was larger and had not ruptured. There’s definitely not a lot of info about PAVMs

#3

I know it’s been a while since anyone posted- but how were your pavms tested?
I’ve had 2 bubble echos (one was positive)
2 oxygen shunt studies (one was 11% shunt)
CT scan - no “significant” avms
They’re thinking of a pulmonary angiogram next…