NF2 Diagnosis

[BeJoi]

Hi Everyone,

I've heard a lot of people on the forum mention NF2.  Is it something that can be diagnosed before treatment, or is it only found out if there is a recurrence of an AN on the same or other side?  If a tumor recurs, does that mean you have NF2?

Thanks,

Beverly

[Dealy]

Bev- This is in reply to your inquiiry concerning definition of NF2. It does not mean recurrence of a tumor. If you had one tumor-then you are an NF1. Two tumors on each side is an NF2. Some NF2's on this group have had bilateral tumors at once including mennginomas or tumors on the spine. NF2 is  consists of a different DNA structure than NF1-thus more difficult to treat. Most NF2's get Bilateral AN's in each ear but growth rate can be different. Example-My first AN was on left ear in 1988-had  surgical removed wi th no problems. I lived with one sided deafness for 18 year until 2005 and considered that normal. In 2005 the right side of my face went numb at work one day. Subsequent MRI indicated another AN on right ear measured at 2.4 bye 2.0 CM. Obviously it did not grow overnight. Could have been around in 1988 but I threw those films away thinking I would never see one of these again-so their is no indication if it was missed in 1988 or it grew later. However there are different forms of this condition. Without my knowledge I had symptoms but did not realize it. Example-little growths under my armpit-on both side-very small coffe latte spots on my arms. Apparently their are tests for NF2 ( I never had because I know now I am) however I understand this test may not be conclusive as identifying NF2. My wife and I never had children-now I am glad in a way because it has a 50% chance of being passed on. There is no history in my family of this condition so unless my some freak occurrence-this malady will stop with me. I had radiation last year (FSR at Johns Hopkins-25 sessions) to try and retain hearing. I am coming up on 10 months out with heaing at 52% compared to original of 100% at diagnosis. Was fited for hearing aid today-since now this is the only way I can hear. Left ear is dead. So if you for some reason are worried about being an NF2- most likely not-but I was told in 1988 that I was not either-so go figure. Best thing too do is constant MRI's. Unless you have some outward visible manifestations I would not be concerned. Thanks_Ron.

[tony]

A very full outline from Ron - maybe,  with one qualification,
a single AN, and NF1 are two quite different conditions
ANs are largely schwannova  (spelling ?) cells
and located on the hearing/balance/facial nerves
NF1 composition is different as is the location
Most docs would regard NF1 as the more serious
- depending where exactly the trouble is.
Also the basic AN is rather more common (sorry folks)
than NF2 - the NF2 odds are around 1:50,000 (?)
Many on this list are worried about an NF2 development
in the future - but the odds are in their favour
Best regards
Tony