Mass general Boston

Types of Avm's AVM in Extremities
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Has any one here gone to mass general Boston for a hand avm? If so what specialist did you see?

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I went to Mass General for an AVM in my left shoulder. I saw doctor Shrivastava who is in the Vascular Surgery area. She was very kind and took care and time reviewing my condition with me as well as treatment options. I am currently monitoring the AVM for changes periodically as I was not ready to move forward with surgical treatment.

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@Ajd

I’ll be interested to understand how you move forwards and for you to share on here as you do (even if that means you continue to monitor it). In some ways an upper chest AVM seems to me to get close to the neck AVM that @Stephanie20 has and it may be that you have a friend in her. Her story can be found here: Has anyone had an AVM in the neck?

Unfortunately, you’re among the rarest folk that we find here, so I can’t find very many friends for you.

Richard

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Thanks for the tag @DickD

Sorry to hear about you @Ajd . I have been diagnosed with an AVM located at the back of my neck, its too complex and situated deep into the muscle that surgery would be too risky so I have been left to monitor it.

I am due to get a CT scan to check on it soon due to some symptoms changing.

Id be interested to know how they plan on monitoring you?

Thanks

Steph

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I’ve been monitoring with imaging roughly yearly since diagnosed. The location is in my deltoid on the backside. While I think the size has increased slightly, they noted no material changes since prior imaging. Fortunately for me, it has not been bothering me too much, and that is why I have not explored surgery more. It also seemed that the surgical option of embolization was not guaranteed to fix the AVM. From what I recall from the last visit, it did also not seem like there were any other recommended alternative treatment options besides embolization. Unfortunately, I do have a few chronic conditions, which are more impactful than my AVM. Most of my time treating anything in the last few years has been to manage those. I feel lucky though, as the conditions are somewhat managed and I live a relatively “normal” life. I am sorry to hear that yours is risky. It would be nice to hear there is a tried and true fix for our conditions.

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