Someone in my support group has NF2, They had GK performed on a 3cm tumour and remained in W&W for their 1cm tumour. 6 years on their 3cm tumour has remained stable and their 1cm tumour has grown to 1.8cm.. Hearing was very poor before treatment on the 3cm side and OK on the 1cm side. Now they have lost all hearing on the 1cm.. but still have some hearing on the 3cm side.
They also came up negative on their genetic testing. They have had issues with hydrocephalus caused they think by the 3cm tumour giving off proteins as it dies. They are currently considering surgery to remove both tumours and having brain stem implants to restore their hearing and permanantly resolve the hydrocephalus Or another round of GK for the second tumour. They are also trying to get on a trial for new chemo/immunotherapy drugs which has shown to reduce or stabilise NF2 tumour growth. Trials so far have shown some promise But side effects of the treatment often mean it must be stopped in the longer term
GK can be performed on NF2 tumours but the failure rate is much higher. People with NF2 are genetically more susceptible to cancer too.. About 50% of all acoustic neuromas that have become malignant after radiation have been for people with NF2.
