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AVM Survivors Network

Getting 3rd Opinion Virtually

#1

I am sure all this information is in here somewhere and I will look later tonight, but I wanted to find out the names of top docs who would review cases virtually? I have gotten good first and second opinions from Cedars ortho/oncology/vascular and USC Vascular Anomalies here in LA and I think the consensus is not to intervene on my AVMs in my arm until they are really bothering me. That said, I have significant joint damage in my left elbow (left elbow is locked at 90 degrees) which is mostl likely a complecation from the combo of VM/AVM is have diffused in my left elbow and forearm. The ortho/oncolgist and elbow specialist at Cedars and the USC intervenional radiologist have said that if I want they can perform capsule release surgery because they think the more concentrated part of my AVM is down by my wrist. That said, they have stressed heavily that the joint surgery could aggrivate the AVM and I need to think long and hard about surgery. I have gotten by as is for over 30 years and have minimal pain. They have me wearing compression now which has taken my discomfort down quite to about a 0.5-1 on a 1-10 pain scale. On the other hand, the idea of having more range of motion in my elbow is really exciting. I will be in Boston in June and think I might get another ortho oncolgy opinion from the doc I had growing up, but I wanted to see if folks had a consensus on a the best Vascular person to get secondary opinion from remotely? I have been all over LA visiting specialists and I am leaning towards no surgery (I start physical therepy for the first time in years next week), but I keep circling back to the fact that the USC vascular anomolies folks seemed to think the joint surgery could be ok and that I have alwasy had a hope of having more elbow mobility. Is it crazy to risk a relativley stable situation pain-wise?

#2

@krisL Hello I know Dr Michael Lawton is considered the best and he used to be at UCSF but now is at Barrow in Arizona and they will do a review I know it used to be $150.
Good luck
Angela