Not sure what I’m looking for here except maybe some support. I have been beside myself for the past week since finding out my 9 month old baby girl has a 6 cm dural AVM on her occipital lobe. This was found somewhat incidentally as we did an MRI brain w/o contrast to evaluate her increased head circumference. So many times along the way to getting that MRI the doctors told us her head size was likely genetic and she was above and beyond meeting her milestones so we didn’t need an MRI unless we wanted one. But we went for the MRI because were nervous first time parents and found that her big head is just genetic but that she also has this unruptured AVM. Although my heart is broken, I know we are so blessed that we found this before it ruptured.
Tomorrow we go for an MRI/MRA to get a better idea of what we’re working with. We are meeting with two pediatric neurosurgeons next week as well. Our neurologist referred us to one of them and reviewed her images with him… They said it looks like she will require embolizations followed by surgical excision. We are seeing a neurosurgeon at Morristown NJ Arno Fried (who our neurologist suggested) and then also Richard Anderson at Columbia for our second opinion.
I am so afraid of the road ahead… looking for any suggestions for a pediatric neurosurgeon in NJ/NY area. Although I would obviously travel across the country to find her the absolute best, I am concerned about traveling a significant distance in the event of post op complications. So I am looking to stay at least within driving distance of NJ.
Any other tips, personal experiences, etc are welcome. Thank you