Schwannomatosis and fingers?

[Adlon57]

Having a very rare condition, I have never heard of anyone with this condition having benign neuroma's actually in their fingers? I have one in my index finger on my left hand and one on the second finger right hand. Just for medical records, I doubt if I will need surgery.

[hunter5582]

As I understand it they can grow anywhere there are nerves. Some of us with NF get more than others and in less common locations. I expect is is mostly just a roll of the genetic dice.

Hope you are doing well my friend.

[Adlon57 in reply to hunter5582]

I assumed it affected just the arms, legs and the trunk of the body, as you say "it can grow anywhere there are nerves" I wish I had SOMEONE in this neolithic backwoods of a country, called Northern Ireland, I could talk to about this condition, about 75% of the time I know more about it than they do! As far as I know I am the only one in my family with anything similar, one sister did have a brain tumour, another had thyroid cancer? Down the female line via my mother, we have been affected by oesteoartritis but that is about it? Thanks Hunter5582