Jim,
Welcome to an interesting place! This is quite a different adventure than any of us planned. Discovery is a big shock and I hope that by taking about it you can get your thoughts around what it is, ask some of the right questions of the docs and generally calm down about it all. None of us are doctors so we should really look to each other for support rather than giving or construing medical advice.
I think an “infarct” or infarction will be a clot, so it is perhaps reasonable that you are on thinners to try to dissolve those as they may be giving you some of your symptoms. Longer term, you probably don’t want to be on thinners if you can, as an AVM is arterial flow of blood into a (weaker) vein, so a risk of stroke if the vein gives out. Good hydration would probably be a great idea if you’ve managed to get some clots.
If the docs are already indicating “we might not operate” it is likely your AVM is a bit deep or a bit complex. It’ll be a good thing to find out what it is about your AVM so you can be sure to hold the docs to account. Very occasionally you’ll get a doc who has one specialism who knows he wouldn’t dare treat you using his specialism but if he (or she) is a bit too specialised, may not refer you elsewhere for a different opinion. Thus, open surgery is undertaken by a neurosurgeon but other forms of treatment for AVMs are undertaken by an Interventional Radiologist.
Rather than download everything now, I’ll stop there and let you ask anything you need. We’re all here to support you.
Like you, I got to 50 without caring or worrying about health. Then I found mine. I have to agree with you, moving through healthcare takes far longer than anyone would like. My story (in two parts) here.
Very best wishes,
Richard