NY or anywhere to find pediatric docs to help. I have an amazing 17yo son just diagnosed with probable AN right side. He has an extensive & complicated neurosurgical history. He was born deaf in his left ear. Other than that he was a typical kid until he was 5. During a "simple" procedure he acquired a fungal infection in his brain. 1.5 years in the PICU 40+ brain surgeries.. he fought like hell & beat the odds
Of course he sustain significant brain injury ...BUT the boy everyone gave up on except for his family made miraculous improvements he can talk, eat,laugh, show love etc.
In 2011 he was diagnosed with an occipital meningioma, completely unrelated (as far as we know) to his previous issues. Surgeon was baffled as to why or how my son was plagued once again.
Here we are now with another tumor 1.3cm x 1.1 cm unknown to us it was present last year on his MRI (.7cm x .6cm). I am so devastated for him
He has been through so much and the tumor is on his functional side. I can't let him lose his hearing! We were told by his NS surgery needs to be done within 3 months. We meet with NS to discuss it all on Monday. I am so scared. I must leave no stone unturned & ensure I make the best choice for him. I have been researching for a week straight. So overwhelming.
Any insight to treatment doctors, anything & everything would be very much appreciated. Thank you.
