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AVM Survivors Network

AVM in hip bone/Looking for Dr in Philadelphia/USA


#1

A recent MRI shows an AVM in my left hip (actually femur), inside the bone. I am looking for a doctor or doctors preferably in Philadelphia (Eastern USA) or anywhere in the USA who has experience with this situation and how to treat it. Any tips/guidance would be greatly appreciated.


#2

I don’t know anyone experienced with AVMs there but I know a doc in Philly who might be able to help find one. Otherwise I’ve been at Mayo in Rochester Mn numerous times and I highly recommend Dr. Guiseppe Lanzino there.


#3

Thank you TJ127. We, my wife Marie and I, are just starting out. My wife is the one with AVM. Since an AVM in the hip is so unusual, we are following up on every lead we get. Mayo was already on our list of places to find help, and now we have a Doctor’s name to go with it. Thank you.

We are hoping to find a doctor in the Philly area, if possible. Any suggestions would be greatly appreciated.


#4

Hi.

I think you might consider it more like a pelvic AVM and have a look around the Pelvic and Uterine category. Some of the stories in there date back to 2015 or earlier, and few active members date back that far as we changed IT platform in summer 2016; but some of the stories may help to understand interventions tried and the level of success.

If there are any current @PelvicAndUterine members with a hip / femur AVM, I hope they might reply to this thread.

I would also second TJ’s doctors, based on all that he has shared about them!

Very best wishes

Richard


#5

R this is TJ, over and out. (Sounds like I am playing with my old walk-in talkies).

In addition to Dr Lanzino , I know the head of their center for social media (was on the external board when the started it). If you need me to reach out, say the word.


#6

Hi I am from Pennsylvania and I’ve been told that Jefferson in a great hospital.