Author Topic: NY or anywhere to find pediatric docs for my 17 yo son please help  (Read 2731 times)

jakesmom

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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.

Janey

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Re: NY or anywhere to find pediatric docs for my 17 yo son please help
« Reply #1 on: June 04, 2016, 09:33:03 pm »
Praying you will find the right course of treatment for your son.  Your family and he have certainly
faced incredible difficulties.  As you may have read over and over in comments on this forum -
seek treatment from doctors that are very experienced with acoustic neuromas, specifically.
I don't know if radiation would be an option, but perhaps you could ask about it when you consult
on Monday.  Very best to you.