Hi, I have recently been diagnosed with Mosaic NF2 from tumour material, which was removed 3 months ago from a unilateral AN. The last MRI (also 3 months ago) did not show signs of any other tumours in my body. I understand that this will likely mean a milder form of NF2, but I am struggling to find information about what this means for my future. Can anyone with a similar condition tell me what their experience has been like? Thanks a lot.
I have mosaic NF2, If you search for my posts here, you will see some of my experience. Did you get to talk to an NF2 specialist? I am not 100% sure, but I think it is possible to have a single tumor that has NF2-type damage to it without actually having NF2. With only 1 AN, so long as you have good followup care, including MRIs, I wouldn't worry. I have 1 AN, 4 meningiomas (actually, 3 now that one was taken out last year), and, apparently, multiple tiny spinal tumors. Other than the hearing loss on my AN side, I have no symptoms/problems from my other tumors at all :-)