I believe you have NF-2 as have the hallmark, diagnosing sx, bilateral ANs. Spinal tumors occur in about 1/2 to 2/3 but are usually ( not always ) asymptomatic . I believe 30% are symptomatic.
Re, an NF-2 gene, every person has one
on Cromosome 12.2. The reason the gene exists is to produce tumor inhibitor protein 'merlin' ( same as schannomin ). To gain NF-2 one must have two or more mutations of the gene, or, a complete deletion of the gene.
If one has NF-2, the disease, they are born with at least 1 mutated copy of the gene from a parent. However, one mutation isn't enough to give NF-2, so, a spontaneous mutation must occur if
the full blown disease isn't inherited directly.
The %s are of those who have NF-2 is that 50% inherit the disease directly, and 50% have another mutation, or deletion of the gene ( less common ).
Current blood tests are only about 60% accurate.
Thanks for everyones replies. Its really supportive. Its good that I don't have the NF2 gene, but somehow managed to get 2 tumours. I will always worry that the left side will grow but fingers crossed it won't as the doctors said both tumours came at the same time one grew and one didnt. I think I am the youngest person in the UK to have an Acoustic Neuroma. I found one person in Canada who is a year older than me. It would be good to find more people my age on here. I am just new to this website so not sure how to work it yet. Is there any way I can find people my age on here? x