NF@...what is this?

[Kaybo]

Hi All~
I was reading a girl's blog that had surgery on Jan. 25th and someone named JEFF had left her a comment.  He said he had NF@ and had had 3 AN surgeries.  What does this mean???  Can anyone help me out or are any of you JEFF???

thanks,
K

[leapyrtwins]

My guess is that he meant to type 2, but had the cap lock on by accident and therefore typed @ instead.

But I could be totally wrong.

[tony]

Yes - most on the group here are single AN
a few, are a condition known as NF2, where 2, or rather more
tumours can occurr - same places but sometimes spine as well
Generally any surgery/radio option is thought to be a bit more complex
and there is a greater risk of further movement post treatment
its a rare condition - but  complex nonetheless
odds are about 1 in 25,000 that anyone is NF2
so most conventional ANers dont really have to worry to much
Best Regards
Tony

[Patti UT]

HI Tony,
  Long time no chat.  I am curious to know is NF2 tumors are mainly in the head or do people get them else where in the body if you are NF2? I have heard maybe the spine.  A freind of mine had an AN in 91, surgically removed,  7 yrs later, regrowth discovered  it was huge, 26hr surgery, 3mo ICU, they think it got so big due to a pregnancy during those years between the 2 tumors.  1 year later diganosed with a meniginoma in different location in her head, surgically removed.  Then I got my AN, she was there to the rescue for me.  last summer, she was diagnosed with 2 more meniginoma's one on each side.  She got CK (Nova machine?) in Aug on the one on her already deaf side. She is scared of loosing the hearing on her good side if they radiate.  Last week went in for her 6mo MRI to chekc the radiated tumor, and told her there are 2 more, also one on each side.  So currently she has 4 in her head, one that was radiated.  She does not come on this forum, but frequents a meniginoma site.  I have been talking to her since Aug about getting checked for NF2.  One of her doc's tells her she doesn't have any other symptoms of NF2 and doesn't seem to feel she needs to be tested.  Hopefully her main CK doc will be back in town this week and she can push for the test.  Your always a wealth of good info.  What are your thoughts?

Thanks
patti Ut

[tony]

Yes some NF2s are in the lower skull base (only)
perhaps 40% of the total (?)
another 40% ish get a few spinal ones too
then around 20%ish get  many, and many in other places
a very limited no actually get skin lumps as well
The total numbers are so very few - statistics tend to be a bit
skewed. One reason for the poor radiotherapy reccommendation
was a poor turnout in just 5 cases - which was not repeated
anywhere else in the world.
The issue may be that her doc has never seen an NF2.......
As to an NF2 test - yes there is a blood test for the gene abnormality
but only a dedicated clinic would know what, or where, to look for it
Hope this helps
Best Regards
Tony
even then 20-30% of NF2s dont show a definate result from the lab.....
The real issue for your friend is to get in a clinic or programme
that majors on NF2 - they then will know what to look for
If they report "all clear" then it should be OK