I received a call from the neurosurgeon that they have scheduled my daughter’s Gamma Knife for Jan 5. Since the call I have felt a growing concern about her pulmonary AVM. The neuro told me he wasn’t familiar at all w/ these types of AVMs and wouldn’t begin to know how to treat it. The interventional radiologist that did her 1st angio told me we would need to be very careful during any procedures because of the lung AVM.
Please if anyone has had anything similar or any experiences at all with pulmonary AVMs I really need some reassurance right now.
thanks
Ya, the neuros ofen aren’t familiar with AVM’s located anywhere else. The IR’s should if they do embolizations. But not if they don’t treat AVM’s specifically. I’m not sure how to take the cautionary advice from the IR. What and Why do they need to be careful above the normal reasons to be careful? What is the actual concern about how GK or an angio will “do” anything to the lung AVM? Because of something they will have her hooked up to? Because of anesthesia? Instead of just “they need to be careful” I’d ask him specifically WHY they need to be careful. That may help you grasp it better and also at least give you a direction to start your research into how to be careful.
I found some of the Pulmoary AVMers!
Try looking up their pages to see if they haven any info there or in past discussions that may help. And of course you can try reaching out to them directly!
Patricia Duguay
Becky Arriola
Ashton
Katherine Nixon
Shalon
shalon,
thank you!
I will start looking into their posts. The IR explained it to me but I was a basket case that day and now I don’t remember exactly. It had something to do with the blood flow to the heart so it is something I want to check up on.
Wait…my spreadsheet is ALL messed up. I’m not sure I sent you the right list…geez! I blame it completely on my new version of excel which is very pretty but has turned me into a completed idiot. I won’t at all admit to user error 
I’m going to redo it and I think I’ll probably come up with an entirely different list for you. Sorry!!!