Thanks Allie! Was your daughter’s AVM removed or did you all do the Game Knife Radiation? Was it deep in the cerebellum near her brain stem or more superficial?
Hi again,
She had an emergency craniotomy right after the bleed and the surgeon was able to remove most of the remaining AVM then. She had an angio 6 weeks later and at that time they found a small aneurysm and some remaining vessels that they embolized with Onyx glue. We thought it was all taken care of after that but then after her second angio which was a year after the rupture, they unfortunately discovered what was either residual vessels or regrowth. At this point we were given the option of cyberknife which I think is very similar to gamma knife, but after reviewing her MRI, both surgeons recommended another surgery. I guess it was fairly simple to access the area due to the previous bleed. So she had a second craniotomy 16 months after the first one to remove those vessels. That was May 2018. She’s had a clear MRI since then and her next MRI is scheduled for September this year. She will have another angio in the next year too I think. Her surgeons have told us children need to to be monitored more closely because they’re more likely to have regrowth.
As for the location, it was on the right side of her cerebellum but just right of centre. I’m not sure how deep because the bleed pretty much obliterated it so once it was out we didn’t really focus on where it had originally been. A decent portion of her cerebellum was basically blown away by the bleed. I know she had swelling throughout the suboccipital area and up into the lower occipital lobe – her vision was affected for about a year after the bleed. And her brain stem was compressed but I think that was not so much due to the location, but more due to the fact that it was a very large bleed and in that area of the brain there isn’t a lot space for the blood to go. Her fourth ventricle/posterior fossa was filled with blood and the swelling was pretty bad. Three and half years later though she has regained an amazing amount of her previous abilities so we are extremely lucky, knowing how bad it could have been.
Hope that helps.