Bilateral acoustic neuroma

[Asimjunaid]

Hi my brother about 16 yrs old was diagnosed with bilateral acoustic neuroma(neurofibromatosis type 2) in july 2016 ..his left tumour was 4cm and size of the right one was 3 cm .at that time his condition was allright he could hear and had no real balance issues...then in august we had him undergone gamma knife radiotherapy for the left tumour but after that therapy his condition became very bad suddenly hearing was lost in both ears had bells palsy .dysphagia.unable to talk and walk....we did a MRI scaN and it showed that there was hydrocephalus so we did vp shunting but his condition still isnt improved now in feb 2017 his righy ear will be irradiated ....can anyone plz guide me regarding treatment...and what is the prognosis.....

[Anglina]

So sorry to hear of your troubles. I can't answer your questions, however you can find some good information and support from these sites. bana-uk.com/ and anausa.org/

[anan88]

I agree with Anglina that Bana (in the UK) is good, but also look at the Headway website. They cover all brain tumours, they are very good and have some really thorough information. Also try to keep your GP on the case so that you get referrals to every kind of therapy/advice/consultancy available. I am still improving 5 years on, so don't ever give in! Best of luck, we're rooting for him! X

[Kristyll]

Hi I was investigated for NF 2 but have had peripheral tumours as well as AN which could be mosaic which is a mix of NF 1 and2. I in my journey met many people with NF2 and there was a Pakistani male who has it amongst many others. There is real difficulty communicating but your brother does not sound well enough to learn lip reading or sign language, as there is no cure and can be hereditary. Children can be tested if their parents have NF. I feel for him and the rest of the family trying to help him. I suggest joining the Neurofibromatosis Association where you can find the best support.I wish you well.