Our AVM Caregiver, Jonna, needs help! Her Dad has an AVM and will not accept surgery. Jonna is a young mother and doesn't know what to do. Can you send her a message and provide her with information or support?

Thank you, Louisa

Jonna, I pray that someone on the Network can provide you with information that can help you! Stay Strong, Jonna!

Jonna...there is a sub group of Children who have Parents with AVM's. There are 2 members on the group who might be able to give you support and information. Please join their group and contact both Nikki and Michelle.

Please join the group so you can be in contact with them.

Wishing you the Best, Louisa

Hello to Jonna,

I'm not sure I understand what all you are facing. Does your Dad have some reason that he doesn't want to do the surgery? Did Dr. O say something to him that made him think he'd be better off without surgery?

If Dad's behavior and symptoms are deteriorating, it might be a sign that the AVM is causing more issues.

Did he have some deficits from the first bleed? If he has an additional bleed, the deficits could become worse.

The surgeons we spoke with prior to our surgery indicated they thought they could successfully do surgery. Of course there are risks, but to us, the risks of surgery on a known schedule by a known surgeon seemed to be a safer bet that having to undergo emergency brain surgery from whoever was on duty at whatever hospital was closest to you.

Was there some reason that the bleed was in JUly 2012 and surgery not scheduled until this April?

Hope this helps.
Ron, KS