child just diagnosed

[jakesmom]

I am 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.

[NEbluebells]

Big hugs, Jakesmom. I am so sorry your son and your family is going through this - it sounds like he is quite a fighter and he is lucky to have such a great family to support him. I said over and over again during my diagnosis that I was so glad this was happening to me rather than my kids.

I just had my surgery (translab - and I see that is probably not an option for him) at the House clinic (Drs. Slattery and Schwartz) and it was an excellent experience.  I would recommend them in a heartbeat. Has your son lost any of his hearing on the AN side, yet? From my understanding, surgery can not restore hearing but it can stop it's decline, depending on the location of the tumor.  I would send his MRIs to the House clinic doctors, along with any hearing tests and they will call you (free consultation). I think there may be a few other free consults, too.  The House will take very good care of you - they will not take advantage of you (Dr. Schwartz straight up told me I would probably have the same outcome from surgery or radiation, it's just which ever I was more comfortable with). I have never met more compassionate doctors in my life.

Also, if it's any consolation, my pain was never above a 7 on the 10 scale and that was just in the first few days - as a mom, that's something I'd be concerned about for my child, too.

[jakesmom]

Thank you so much for the information. I am looking into house clinic I am just concerned if they run into a problem with his shunts how will it be managed. Also its not clear if they actually treat pediatrics. Its hard to tell if hes lost hearing. As a mom I say yes he has within the past 6 months. We haven't had any audio testing since 2008. I wish it was me instead of him, I would do anything to take away his pain 

[Cheryl R]

At 17 he would be considered in need of adult care.      I do not think there is any dr who does just younger pts as most ANs are in older people.      I have NF2 and did not go to House but have met them thru the AN symposiums which are not held now and they would have the most experience any where for younger pts as they do do  them.   Patients come from all over the world to them.      I actually would do Dr Friedman now at USC Keck.            They would be able to refer you to the best local dr for post op care of the not usual case.               I wish you both well in how it goes when it is not the typical case.                       Cheryl R

[michellef08]

I was 28 when I had my surgery done at House (3 years ago). While not as young as your son, I am definitely among the youngest patients. I would highly recommend Dr. Schwartz at House!! He was able to preserve my hearing using the Middle Fossa approach, and I didn't have a single balance or facial issue! Good luck!!

[KeepSmiling]

I don't have any advice for you. I just want to say how I was moved by your love and TLC of this special child. Best wishes!