Hi. My name is Michelle and my dearest friend's three-year-old son, Connor, is being treated for multiple brain AVMs. We have never met anyone in this situation and the medical team doesn't seem to like questions. So, we wonder, "What's his prognosis?"
People noticed that Connor's head looked large and a hair stylist noticed around age 2 that his "soft spot" hadn't closed. He has not had any neurological problems. He walks, talks and plays like other preschoolers. After several doctor visits, the July 2010 MRI confirmed that there are multiple AVMs in his brain.
In September 2010, he had his first embolization surgery. Afterwards, some hair fell out from the back of his head from the radiation. Otherwise, he continued life as a normal kid.
In January 2011, his "soft spot" closed. At first, his parents thought this was an answer to many prayers. However, Connor started complaining of headaches. And when his medical team started the angiogram last week, they confirmed that the situation had grown more complex.
The very next morning, he and his mother took a medical flight to NYC, where he's now under the care of Dr. Alejandro Berenstein. In fact, he's just checked in for his third surgery. (Last week, Dr. Berenstein embolized three AVMs.)
This surgery was moved earlier than originally planned because the team learned that there's considerable pressure on Connor's optic nerve, threatening his vision.
He has not had any AVMs rupture.
If you share a similar story, please let us know your outcome, how your life is today. I know that each case is unique, but we're just looking for some ideas about what Connor's future could be.