I was prematurely diagnosed in Nov 2024. Confirmed in March 2025. And I’ve yet to get treatment. I’ve been told from people: “get treatment right away! Get treatment now!” But it’s not easy. Where I used to live, my insurance was limited. I had to drive 2 hours to see a specialist and the best they could do for me was an angiogram. They did not want to touch me and recommended a yearly check up and to just live with it. After having been unemployed for half a year due to location, I moved in Dec to LA (I live with a relative). And I got a job. Temp to perm but still… I qualified for LA Care Health Plan. But I’m having a hard time finding specialists that accept it. And I mean specialists that have the gamma knife experience that I need. I’m afraid of messing this part up because it’s deep in, in an important area. The other best option I got is UCSF but since I’m feeling defeated, I don’t think I’ll be able to get a referral there. Arizona is close and that’s where Barrows is but I’d have to have out of state insurance or move and still try to see if they accept me. And well, that’s not realistic for me right now… Not to mention that this is a time sensitive issue. That sort of thing takes time. I suffer from headaches almost daily. It sucks. I can’t carry heavy stuff. I can’t bend down too long. Sometimes I feel weird on my right side. My left ear hurts. I want this thing out. 
I’m at a loss and sad that I haven’t been able to get treatment.
I hear you my friend! I was lucky in Canada with public health care, and received the greatest treatment from some truly unbelievable folks, doctors, nurses and the whole collective of service providers. I can’t imagine trying to navigate private system, and we hear from many.
Stay strong, some of the greatest services are available in the US, but access is challenging with huge cost. I’m not sure if there is opportunity to find assistance, but worth keeping an eye open for. I’m going way out there but have you ever thought of sending your scans to Canada and see if there are options? Take Care, John.
Hi John, thanks for replying. I appreciate it. Sometimes I feel against posting because I feel like I’m screaming into a void. 
Increases the loneliness in this awful (so far) journey. I could try but I imagine it’s going to cost me. I’m tight on money right now despite saving while living with relative (not free I should add, but far less than what I would be paying) Rent in LA is crazy. But I think that’s where it would end. Just telling me their opinion… What I wish for now is treatment but it’s been tough. I feel frustrated and defeated right now. I wish it would be as easy as just… getting what I need without all these loop holes. But reality is, it’s not. I try to distract myself lately but that can have its limit.
You cant put a pricetag on your life. Hospitals have programs in place for folks with money issues and they cant turn you away!
best,
Tom
ive had at least 15 embos and they accepted what insurance paid
no out of pocket.
Hi, sorry to hear your struggles. If you don’t get treatment and you have a bleed then you could end up in a real mess.
My avm was unknown and I ruptured, went through ICU and hospitals for a year. Annual angiograms for 5 years post surgery. The total bill was a lot but I now live an independent life.
I k ow that feeling.
You are not alone, talk, this group is brill. People who know what you aee going through, have experience of your illness, and lets be honest… No one knows what you go through unless they been there.
Sray strong, from UK.
I genuinely hope that you can get the help & assistance you need & confident someone here may put you onto the right path as these stories are far too common… keep up the fight we are here for you… God bless!