Hi @Stephanie20
Honestly, if they view the risks of intervention as higher than leave it alone, then that is a sensible answer.
I would say a couple of things:
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You could get a second opinion.
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I’d ask if they’ll scan you from time to time – maybe every 2-5 years, or if you get additional symptoms from it, go and get it looked at again.
In regard to a second opinion, you might even send your scans, etc to one of the major neurosurgery practices of the United States. Healthcare in the US is “private” and possibly the most expensive place in the first world to get treatment but the major practices will offer a “remote” second opinion for something like $100-$400. So if you’d like some corroboration, that would be a way to go. We also have a member, @Indalo, who went to Germany to seek a second opinion.
As far as keeping an eye on it is concerned, we had one other neck AVM member who often comes to my mind, @TJ127. Unfortunately he passed away a couple of summers ago aged about 54 from a condition unallied to his AVM but he had a large upper chest / neck AVM that was treated something like 17 or 18 times over his lifetime. Part of the reason he sought treatment in recent years (I think tail end of 2017 / early 2018 in particular) was because he was getting some additional symptoms and a scan revealed that his AVM was starting to make its way up his spine into his cerebellum. So keep a bit of an eye on it from time to time.
I’m happy to help you find some of Tom’s story. It’s a long story (by which I mean this is a good thing) and he was generally well, returned to work after each of his operations, until the one in early 2018. However, what we learned in his passing was that there was another issue going on that was clearly affecting him even more than his AVM. I think the trouble is when we have something like this, we focus on it, and it’s not always the only thing going on.
I hope these ideas help a bit. However we can help you be the survivor that you are, just say!
Richard