A few things have changed since my last post. I am thankful to report Jacob will be having his right vestibularschwannoma (acoustic neuroma brain tumor) removed at the University of Virginia with Dr. Ashok Asthagiri, Jacob's neurosurgeon from NIH on October 29, 2013.
Jacob will be having CT and MRI scans on Wednesday, October 16 here in Tallahassee to determine the approach Dr. Asthagiri and Dr. Kesser will use for the resection. We have not met Dr. Kesser, but he trained at House Ear, which is a leader in NF2 care.
The University of Virginia has a neurofibromatosis (NF2) clinic which is lead by Dr. Asthagiri. Since a vestibularschwannoma (acoustic neuroma brain tumor) resection in a patient with NF2 is significantly different from a standard acoustic neuroma resection performed in a patient without NF2, we wanted to take Jacob to a doctor highly experienced in NF2. There is strong evidence that shows that tumors are more difficult to resect and that multiple nerves may actually be involved in patients with NF2 versus regular acoustic neuromas, therefore often causing worse outcomes like higher facial nerve palsy rates. A neurosurgeon with specialist experience in NF2 is recommended in order to be able understand the manifestations found in an individual with NF2 and take these into consideration when operating in order to make surgery as safe as possible for the patient.
So, I ask for your continued prayers in our NF2 journey. I ask for prayers of peace and understanding for Jacob as this surgery quickly approaches. Jacob will lose his hearing in the right ear and could suffer from facial paralysis and balance loss. There are many other risks, but these are the most common side effects to this surgery.
If you want to read about the doctors please see the link below.
As always thank you for your support. If you would like to help with play dates for Gavin, time with Brie or financial donations for our out-of-budget costs, please contact me.