Is there anyone here who has avm and decided not to have it treated? My mother is set on her decision not to have surgery. She said it will only make it worse. She has an appt with the dr on the 3/30 to discuss treatment if possible.
In answer to your question, YES, there are people here who for various reasons have elected NOT to have their AVM treated. Drs might have said it was inoperable, the person fears surgery, etc, etc. Only your Mom can make the decision.
But it really should be an informed decision. How many AVMs has the DR who told Mom it was inoperable treated? Has he had 2 AVM patients or 2,000+? To me, this is a big factor in how much weight to put on his answer.
In 1991 when Chari's AVM showed up, the first neurosurgeon who looked at the scans said INOPERABLE. Five years later, a neuro team at Stanford looked at her scans and said "Come on out and let us fix it!" About 6 years later, her AVM was GONE................................. Not saying that will be the case for your Mom, but do want to show you/her there might be options.
When I looked at her first scans, the AVM filled almost half of her brain as well.
I would encourage you/her to have your scans sent to another top notch place to have a 2nd opinion. It might be the same or it might not. You local team should be willing to help you coordinate a 2nd opinion. Should be as simple as discussing it, and having your scans sent out. Most are on DVDs now, so easy/peasy to do.
I read your bio, and think this is the first time I've heard an AVM referred to as a bag of worms, but that is exactly how a scan of an AVM appears. Don't be shocked by that. All you are looking at are AVM blood vessels.
Best wishes,
Ron, KS
Hi Rosa. There are 146 members in the inoperable group on here. I gave you the link on an earlier post (scroll down your profile page) if you wish to join that sub-group. I do know we have a couple of members on here who are in their 70s and their AVMs never did bleed! Please let us know how that next doctor’s appt. turns out.