Hello, everyone. I’m grateful to have found this community. I’m finding a lot of valuable perspectives and experiences to help inform our AVM journey. So, with a somber heart and a lot of gratitude, thank you for sharing and being here.
In late 2019, my then 10-yr old daughter started having frequent headaches, including migraines. Her pediatrician referred her for an MRI. The next day, I was called at work by a local neurosurgeon’s office and told to immediately bring my daughter to the hospital because she needed surgery. Well, that was a mess. At the time, my daughter was in school and when I arrived to pick her up, they were having an unplanned fire alarm and all the kids were outside. I was a coming to pieces in real time, in front of an entire school of children. So that’s me.
The neurosurgeon was concerned that my daughter’s AVM was rupturing, but it turned out not to be the case. My daughter was diagnosed with a large, “diffuse” AVM in her right frontal lobe. Almost immediately the Covid pandemic was upon us and the stress of that served as a peculiar kind of distraction from the diagnosis. She’s now 12. She’s had a few MRIs/MRAs and a cerebral angiogram. We’ve obtained opinions from Barrow, Boston Children’s, Mass General and Yale hospitals. My daughter has relatively mild symptoms so we’re “watchfully waiting” the AVM, for now. She has intermittent numbness in her fingers, occasional headaches (few, if any, migraines, oddly), but recently started feeling lightheaded upon standing. I’m constantly mindful of the risks of putting off treatment while also being aware that treatment comes with its own risks. She is getting regular MRIs and the AVM appears stable. So that’s her.
And that’s where we are. If you can indulge me, my first question is: is anyone aware of any specific support groups or organizations for children and teens where kids can connect with other kids familiar with AVMs?
Also, I’m curious to know what your go-to resources for ongoing research on AVM treatment are: medical journals, legitimate websites, etc? I find that many useful things are behind expensive paywalls.
I’ll start with those as my first of what will likely be many questions for this audience. Thanks!