another "bump" in the road!

[madison]

hello everyone! before i ever knew about my acoustic neuroma, i had a lump in my finger and one in my armpit. the surgeon was sure they
were just fatty tumors until he got in there and found they were neurofibromas. i had gamma knife for a right A.N. and i have a left meningioma.
i was tested for nf2- came back negative and i don't have any of the other typical signs. now i just noticed a lump on my forearm up near my elbow area.
i am pretty sure this will turn out to be a neurofibroma as well. i scheduled an appt. with the same surgeon. guess we'll see what happens.
just thought i'd post. i would appreciate any comments you have. thanks!

[jerseygirl]

Hi,

My neurologist would diagnose you with NF2 somatic mosaic. In other words, you have NF2 gene in some cells of the body but not all and not in the blood where it can be tested. It is impossible to say which cells are affected. Having both AN and meningioma ( any other kind of brain tumors such as glioma, astrocytoma, etc) plus peripheral neurofibromas would qualify you for NF2 diagnosis   but because nothing was found in the blood, the diagnosis would be modified to NF2 somatic mosaic. There is no statistic available on how many NF2 somatic mosaics develop full blown case of NF2 and the mutation spreads to every cell of the body, but it is a  possibility. Not all doctors know what it is, so try somebody who really is into it, find out in advance.

Just out of curiosity: where did you have NF2 test done?

Finally, welcome to the club: I am one, too. There have been no new developments since the initial presentation, so I am very relieved and hoping things will stay this way.

Good luck and keep us posted.

                     Eve

[Lizard]

Why is it that some of us "grow" tumors and others don't....?  Wonder if its linked to some other common diagnosis, like fibromyalga or dermatographism (when you scratch your skin and it causes welts).  Just interesting is all...

Sorry to hear that you are dealing with these other growths, as they can be quite unnerving.
Hang in there,
Liz

[luvzmutt]

I have NF-1 (dx at age 17, I'm 46 now) and was just diagnosed with a AN in my right side.  I also have an optic glioma on my left side that has not changed since I first became aware of in 1982.  I have no symptoms from the AN, it was found on a routine MRI for my glioma.  Other than two small pliexiform neurofibromas and small dermal neurofibromas I have no other symptoms.

[jerseygirl]

Sorry you have to go through all this! Hope you have no new tumors! I wonder if there is a blood test for NF1 just like for NF2 and what mutations does AN have if it NF1. Sporadic and NF2 ANs have NF2 mutations as shown by some studies but genetic testing of ANs once removed is not routine so it is hard to tell. I guess symptoms of NF2 and NF1 cross at some point, so much that it is impossible to say which is which unless there are further developments, such as tumors, and the picture becomes clear. 

I wonder if madison has any cafe-au-lait spots. More that 6 large ones point to NF1 diagnosis, rather that NF2. Lisch nodules in the eyes also point to NF1 diagnosis. All of this is  usually discovered in childhood, so I assumed if no one saw it by now and doctors recommended NF2 testing, NF1 has been ruled out. To add to the confusion, it is possible to have both. They are genetically very different, on different chromosomes.

                       Eve

[luvzmutt]

I will ask when I have my first appointment next Friday.  I'm also going to ask my neuro-opthamologist when I see him the end of august.I will probably also call thevNF clinic at Johns Hopkins.