Author Topic: NF2  (Read 5189 times)

cin605

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NF2
« on: March 15, 2009, 12:14:20 pm »
My cousin ...my fathers sisters daughter has nf2 does that increase the risk of me having it?
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Jim Scott

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Re: NF2
« Reply #1 on: March 15, 2009, 03:19:21 pm »
Cin ~

As I understand it, NF2 is 50% genetic (half of all NF2 cases are attributable to genes) and you have to inherit it from a parent.  If you're worried, I believe genetic testing is available and could eliminate your concern - or serve to warn you.  Preferably the latter.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Cheryl R

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Re: NF2
« Reply #2 on: March 15, 2009, 03:34:09 pm »
How old is your cousin and how old when the NF2 was discovered?       I was 51 when mine was found after already having one AN surgery.         I know of no other relatives with any.      I had older parents (Dad was 53 when I was born).        I always wondered if that had any effect on me ending up with it.              My dad died when I was 21 and I don't think he had it as had diabetes and some possible older age symptoms but I really don't think it was NF2.       I wouldn't think you have to worry about getting it.              Did you tell your dr about it?   
I love the pic of your bearded dragon.     Malibu is the name,right?             My brother ion law still has theirs and saw it recently.    Has grown a bit.      No babysitting it this year that I know of. 
                                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Raven

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Re: NF2
« Reply #3 on: March 15, 2009, 04:55:07 pm »
Jim is correct, genetic testing for NF2 is available but from all the research I've done on NF2 it is only 60% accurate. I was diagonosed a little over a year and a half ago at age 48. My dad passed away eight years ago at age 66 and my mother is stll alive with zero symptoms..........so who knows how I got it. Also people with NF2 get tumors on thier spine as well, after my first consultation with my Dr. he ordered an MRI of my spine, I got five small tumors on my spine but are a non issue at this time.

Hope this helps

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

tony

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Re: NF2
« Reply #4 on: March 16, 2009, 01:53:01 am »
Sorry for your troubles
The NF2 genetics thing is just a bit more complex
than the current search for dark matter
Its unlikely that both your father and his sister are NF2
- possible, but unlikely
(If you father was not - it could not link to you ?)
The first question is - do either of them have symptons of NF2 ?
If not, then the daughter maybe a "founder"
- ie there is no genetic link back through the parents
about 50% of all NF2s are "new ones"
(however, were she to have children it could be passed on, 50/50 chance)
That said all of the close living relatives
should have the test
Given the ages (40-50 ?), and no clear indication so far
it is unlikely that there are further links to it
- but only the test will confirm
The test results % accuracy is getting better these days
- more like 75-80% in recent years
Finally it would be prudent for you just to have a regular MRI
scan annually for a few years - for peace of mind ?
Within the clinic that the daughter attends
they should be commencing a genetic search ?
I wish you and all the close family well in this
- the good news is that the there are successful
ongoing trials for an NF2 drug
so it is getting better
Best Regards
Tony

cin605

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Re: NF2
« Reply #5 on: March 16, 2009, 03:28:45 pm »
I do not think my father has it or any symptoms of it.My cousins was discovered when she was my age 42 she had 5 ANs in her
vestub.some on left some on the right.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old