Author Topic: Advanced NF2 Tumor, Complications from Surgery  (Read 256 times)

PBFight4SB

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Advanced NF2 Tumor, Complications from Surgery
« on: May 02, 2021, 07:19:58 pm »
Hello All,

My son got diagnosed for NF2 at the age of 17. He has large vestibular tumors on both sides. His largest tumor on left side had 90% hearing, the other side, as per audiometry, 0% word recognition/hearing. We observed he was out of balance and found the tumor through MRI.

Children's Hospital did "debulking" surgery in Sep 2020 on left side because it was >5 cms and found to be compressing bran stem. But, the surgery caused his remaining hearing to reduce considerably. Fortunately, no facial paralysis or other side effects from the surgery.

We consulted Johns Hopkins and they have now asked for surgery on same side (left) and remove the tumor completely. This will lead to complete deafness as he has no functional hearing on right already. Additionally, we are scared as they mention facial palsy, swallowing difficulties, voice issues etc.

We are now contemplating whether surgery is really needed as he is healthy otherwise except balance, hearing.

What could happen if we delay surgery? Is there no other treatment option to reduce tumor or bring back hearing at all (including some Ayurveda etc)?