Hi @lalala1212
That is definitely large!
The main person I know who had a large neck AVM was @TJ127 but unfortunately he passed away maybe three summers ago, after an unrelated illness. That you’re so limited by state and finance is a big deal. TJ’s main man was a guy called Giuseppe Lanzino at Mayo in Rochester, MN.
I think even with your limitations, I’d see if there is a “remote” second opinion program at Mayo in Rochester and whether that might be affordable, at least as a second opinion. Such programs often cost around $200-400, which in the scheme of neurosurgery is tiny but can still be a challenge for some of us. You may do well to get all of your in-cover investigations completed first and then share the reports, scans, etc via a remote second opinion service.
TJ’s AVM was in his neck and was treated a number of times. I think the first treatment might have been 1978. However, each time it was not 100% occluded (and sometimes it is impossible to occlude an AVM wholly as it can cut off supplies to important things) so he had a number of surgeries over time. He recovered from each very well until he had a visit in winter 2018/19, I think, or 17/18 by which time his AVM had recruited various feeders stretching up into his head. There was some pulmonary involvement in TJ’s AVM, it affected his swallowing and tongue and as I say went on the rampage towards his cerebellum. So it was definitely big and definitely complex.
Depending on how similar your AVM may be, Giuseppe Lanzino may be your man and while neurosurgery may not seem relevant, actually it may be relevant, so if it is similar to TJ’s AVM, consider a neurosurgery appointment with a major neurosurgery practice in Florida.
I hope these thoughts might help. I can tell you that TJ was an amazing guy and if sharing his story with you leads on to helping you, I am convinced he and his family would be most touched.
Richard