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An old newbie has questions

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oldewoman:
I'm just coming back to the boards after a long absence, and I'm unfamiliar with some of the terms I see. My AN was removed 15 years ago via craniotomy; gamma knife and such treatments did not exist then or were not in common use. Watch and wait was not an option for me, as they didn't even know it was an AN pre-surgery, just that I had a brain tumor and it was coming out as soon as they could schedule an operating room. Anyway, what does NF2 mean? It seems that my "treatment" post-surgery (which amounted to "Bye, have a nice life") has also been very different from what most people experience these days.

Btw, I am 100% deaf in my right ear and had facial paralysis on my right side following the surgery. I have had four surgeries on my right eyelid, the last three to repair the damage caused by the first one, just days after my brain surgery, in which my eye was stitched partially shut. (It looks reasonably normal now.) The paralysis has improved over the years, but no one told me it would or to have therapy for it, which would probably have helped.

Anyway, sorry to be going on and on, I don't much get the chance. Thanks.

Joef:

NF2 , its a problem with growths on all the major nerves... mainly on the spinal cord. and AN type growths .. they are not cancer .. but are a REAL major problems since they keep coming back ....

There is dna test for NF2 .. and runs in familys...

oldewoman:
Is it neurofibromatosis?

Boppie:
Yes, Neurofibromatosis is the long word for NF.  There is NF2 and NF1.  I believe NF2 is the one that occurs in multiple sites.

tony:
Sorry, originally 100 yrs back (?) all such conditions (currently NF2 and Neurofibramotosis)
were actually grouped under the Neurofibramotosis term
Then, a while back medical opinion decided to divide definition of the condition
(because the conditions were not really the same at all)
into two NF1 and NF2 - the NF1, or NF  is really the old Neurofibramosis
NF2 is quite rare (1 in 40,000 ?) there are a few of us on the list
and now also its own section as well
We have similar issues to ANers - but sometimes rather harder (?)
Currently NF2  divides into two types - though there is a growing
realisation that there might be 3-4-5 variations
We are at the edge of medical understanding here
- information seems to udate almost monthly
I wont go into the genetics - you need to spend at least
ONE  lifetime studying it to get an informed opinion.....
Best Regards
Tony

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