Neurofibromatosis type 2 (NF:2)

Well I live with NF:2 which was passed down to me from my mum. I have know about it for about 9/10 years now. My mum died of it in 2001. I am now 25 and it has had many affects on me. I have tumours on my spine and brain and have had operations on these (2 on my brain) which has left me totally deaf and with a paralysed face so I am unable to smile or talk clearly. It has also affected my balance so I walked like I'm pissed most of the time and I also have a weak left leg. On top of that my right eye is under developed and has been since birth. I have good days where I feel great and bad days where I feel like total shit and can hardly walk and as a resuly doctors and surgeons have said I am not to do paid work as my condition is very unpredictable and I have regular hospital appointments.

I'm going for an MRI scan in september and I'm hoping there hasnt been much growth as I do not want another operation. I have a cochlear hearing brain stem implant which is useless. The thing will not stay connected so I have to go back to the hospital to try and get it sorted out.

When I have had the MRI scans I will post an update. :)