Hi everyone! My daughter just was diagnosed with AVM, we are waiting for her Angiogram to be scheduled to measure to size. But of course someone in a comfy chair at the insurance company has decided because the facility isnt in network she needs to be transferred to care of a provider that is not familiar with AVM. Meanwhile I have not explained to her how serious this can be. How have you explained it to your child? Also what have you done to get the school to completely understand the risks?
It’s good to have you join us and I’m sorry about your daughter’s diagnosis.
I hope some of the @ParentsAndCarers can help you through what you might and might not talk to your daughter about.
I’m pretty sure we would all recommend you hold out for someone very accomplished at neurovascular surgery and/or interventional radiosurgery and/or radiotherapy. (There are three main modes of intervention).
I would say that some of the major neuro centres in the US offer affordable second opinion programmes, so you can use them to validate the information whichever doctor you see gives you.
Feel free to ask anything you like. Honestly.
Very best wishes
Our son was diagnosed with an AVM at age 5 after a bleed. It was in the speech center. He had surgery to remove it. We chose a hospital out of network with a wonderful surgeon who had expertise with AVMs in children. He went back to school one week after being released from the hospital. He stayed only 1/2 days at first. He didn’t play at recess for awhile. His teachers and staff were very diligent in watching over him.