It’s almost 3 years since I last posted. In that time Grace has has multiple seizures. She now has right sided weakness with minimal strength. She wears a leg brace and will probably soon need a night time hand splint. She has had to give up all her activities she enjoyed…cheering, dancing, soccer, flute. Her care has been transferred to CHOP. Recently her father had been talking to a sports caster in Philadelphia who also has a daughter same age as Grace , also with a grade 5 AVM that no one wanted to touch. They met a Dr Cheng from Stanford who felt their child was a candidate for cyber knife and now the AVM is 80 % gone!! Does anyone know of an excellent pediatric neurosurgeon in the northeast, primarily in PA that excels in cyber knife on large, diffuse AVM’s?
Hi Cynthia and welcome back, Very sorry to hear that Grace has been having a difficult time lately, We have changed a bit since you've been here last and I would suggest if you wish a larger audience to view and respond to this question then post the same as a new discussion rather than a blog. Hope this helps a little. Take care