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?
I would check into the pediatric neurosurgeons at Johns Hopkins. Wishing Grace the best.
If you have a local university hospital near by, check with them, university institutions are constantly doing researches on new/improved methods. UCSF, UCLA to name a few.
Wishing you all the best
Thank you for your input LouisaC and Richard
I would also look into gamma knife instead of cyber knife. I was just talking to a doctor at Northwestern in Chicago and he said that gamma knife is better than cyber knife. He also told me to get an opinion from Pittsburgh because they have a longer experience with using gamma knife. Hope this helps. Seek all the opinions you can.
Thanks John, Grace has her neurosurgeon appointment this Tuesday at CHOP ....don't know if you read my page, but her AVM was diagnosed as Grade 5 inoperable when she was 6...she is now 12...her MRI's don't really show changes, she just has continued with seizures which have weakened her right side considerably... Cindy
Hey Cynthia I don’t know if you have but I would look into opinions for gamma knife because it is supposed to be better and more accurate than cyber knife. Feel free to contact me at anytime. And get good opinions.im sorry Grace is dealing with this at a young age 
Have you ever contacted or gotten any opinions from the neurosurgeons at Jefferson hospital for neuroScience in Philadelphia? I don’t know the grade of my AVM but it is also inoperable and couldn’t be glued or sprung because it is too deep but gamma knife was an option for me. I got mine done end of January of this year and they were amazing. Dr. Jabbour was my neurosurgeon and is highly qualified and well known in that field.
Yes Jeannine, Grace was under Dr Rossenwasser at Jefferson for 2 years...offered no suggestions other than to monitor. We were very dissatisfied with Hershey Med, again no options other than monitor. CHOP has worked with Grace the best. Her neurologist and care team are very good with her. Hoping the Neurosurgeon she is seeing at CHOP is as caring as her team. We definitely will also ask about gamma knife...Thank you, Cindy
Wow, I’m surprised… Well definitely keep us posted, I’ll be thinking of Grace on Tuesday… Sending good vibes her way!!
The neurosurgeon appointment response was the same as HMC, Jefferson, Pittsburgh…no treatment…
I am so incredibly sorry to hear this… I have been thinking of Grace all week and was praying for a different answer than this.