Markers for NF2

[Dealy]

 I may not get alot of response from this question because of the few NF2's on this site but I will ask anyway and perhaps some of you (hopefully NF'2 can share your input. I am seeing a local Neurologist now for my Trigemineal neurlgia (Hope spelling is correct) I showed him little growths under my armpit and one starting on my back that are about the size of a good sized pin head. I have head these growths under my armpits for years and never thought anything of it. He has indicated that these are skin tags and are markers for NF2. He said most grow in the groin area-some on the feet. He also said that during birth-the same gene that produces skin-produces the mylein sheath of the schwanoma cells-the reason for the skin tags. He also told me in my last visit that we age that many of AN's stop growing completely because of the lack of blood supply. I am 58 years old now. Most markers of NF2 talk about Coffee Latte spots on the skin which I have on my arm-very small. He said these are probably due too normal aging and have nothing to do with NF2. My question then-Do any of Nf'2 on this site have some kind of physical marker to indicate your condition. I also have very small growths on my face that I always attributed to Sebaceous Spots-but agasin Neuro says these small growths are indication of Nf2. He also stated one can have these symptoms and never get a Brain Tumor of any kind. Thanks for any reply. Ron.

[holly-bear]

Hi there.  I had this bump on my lower back since I was very little.  My mom just always called it a birth mark because it had been there as long as she could remember.  When I was 13 and diagnosed they say that and said it was a fibroma.  Also I have some cafe spots like on my legs and such.  But thats about the only things I have.

Holly

[tony]

The actual visible exterior markers are quite rare in the NF2 community
and even then, say a large number of moles (as I have) isnt in-of-itself
proof - a clue maybe.
When I was checked for NF2 "damage" ie once they knew I was,
and wanted to check the progression
I was quite amazed at extent of the checks and observations made
Most here know of the AN and spine type tumours
- but (rarely) they can occurr in other places
The human body has 45 miles (?) of nerve cable inside
But dont worry - many of us pass to a better place
without ever knowing that some, small, undiscovered lump, was NF2
Best Regards
Tony

[Cheryl R]

I have  one cafe-du-lait spot.       I think I read somewhere that 6 or more is an indication of NF2.  I have one daughter who has one also and so far is clear of AN. as has been MRIed.       I have developed a few skin tags which appear to be the aging type ones.        I am getting some very tiny bumps all over which just look like a rasied skin color bump and have wondered if they are NF2 related.         I have seen people have some pretty weird skin growths from aging due to being a nurse so sometimes hard to tell.         
Today is the 6th anniversary of my very first AN surgery.      I wish that had been the end of it as had did so well.         One sure never knows what the future will bring!
                                                     Cheryl R

[Dealy]

Well-My Neuro told me that the skin tags that I have are definitely related too Nf2-so I guess I cannot argue with him. He also told me that he is treating a son and mother from a town only 60 miles from where I live-the son is a teenager-and also treating a 7 and 11 year old from the same family from a town only 120 miles from where I live. Too think that NF'2 are suppose too be rare-makes you think. I feel sorry for young kids and adults who have this crap. I had a lady acquaintance tell me her mother went deaf-not related to an An of course-and when and  asked if she wanted a hearing aid-she was in her 80"s I think-Her respone- "No-I"ve heard enough. So I guess maybe I will have too eventually adapt that attitude. At my age-I've heard enough. Thanks all for the replies so far. Ron

[Jeff]

Hello all,
I have a few skin tags. My father has a few bumps under his skin. But, they have been a problem for either of us. I worry about my daughter, who was born with a cafe a lait spot. I just can't adopt the outlook that you shared, Ron. I just haven't heard enough. There isn't a day that goes by that I don't wish that I could hear something.... anything. I am evaluating my options regarding the ABI. I have to get an MRI to see if my brainstem was damaged by my stroke. Then, I can decide what to do. I can tell you though, being deaf is not fun.
Sorry to rant on your thread.......
Jeff

[Raven]

Nothing unusal at all with me (or my two boys) on the outside.............the inside, well, that's another topic. The day my ENT told me I had ANs, one of her first questions was if I had any those spots.

Hey Ron..........I've oftened used that saying "I've heard enough" long before this AN crap started, might be time to start using it again.............LOL. Recently I've told my wife a couple times I couldn't hear her when actually I could, it didn't take her long to catch on to that.

Jeff, what rant? I didn't see a rant, hang in there!!

Can't wait for surgery next Wednesday!!!

John

[Dealy]

Jeff- I was just being vicious when I said I heard enough. It scares the crap outta me to tell the truth. Last week my hearing aid had some mositure in it that I was not aware of-so the whole night I thought I was completely deaf. My wife works evenings and comes home for supper. The first thing I told her is- "well- I went deaf" not realizing the problem with The Hearing Aid. I cannot even imagine what you go through or feel-but I am like you-something is better than nothing. So if and when it happens I am trying to psych myself up to deal with all the repurcusiions of deafness. Like you say-no fun. Take care and thanks for your input. I did not take it as a rant either. We have to be able to share our frustrations with each other since in some aspects we are all in the same -so called boat-but we have different battles to deal with. Ron