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Author Topic: How do you find out if you have NF2?  (Read 2339 times)

amymeri

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How do you find out if you have NF2?
« on: June 23, 2006, 01:27:58 pm »
I had a large AN removed this year.  No family history of NF1 or NF2 but my husband's grandmother died of a brain tumor in the 50's (unknown type) and I just thought with brain tumors on both sides of the family if there was a way to screen my children, I ought to look into it.

So, how do you know? 

Amy
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Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

tony

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Re: How do you find out if you have NF2?
« Reply #1 on: June 23, 2006, 01:40:52 pm »
A full answer is too long to list here
- If you type in NF2 and search on the net it will give you 1001 answers.
Short form: two tumous, or more, is usually NF2,
it is quite rare (one in 40,000 people ?)
- you have just one - so you should be alright
any suspicion of anything more to it then you can look out for
a special NF2 clinic - they will assist with the reasearch/genetics/
family link issues
Be clear on this - it is better to deal with experiance in this area
medical knowledge is quite thin due to the rare nature of NF2
- its possible to meet Docs who have never seen one.
Best Regards
Tony
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Joef

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Re: How do you find out if you have NF2?
« Reply #2 on: June 23, 2006, 02:42:34 pm »
   I just watched an episode of "House" the TV show , and they were talking about a patient who might have NF2 and where going to do a "test" ... of course that was just a TV show!!

   I have often wonder about this, my mother (65+ years old)  has very bad hearing in the same ear as my AN (uses a HA) .. but has no other symptoms .. is this just a coincidence? why doesn't every one get a full body MRI once a decade? cost? if we did, would the number of AN's found skyrocket? I bet they would !
« Last Edit: June 23, 2006, 02:49:03 pm by Joef »
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4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

tony

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Re: How do you find out if you have NF2?
« Reply #3 on: June 23, 2006, 03:08:25 pm »
I agree completely - given that the cost would be substantial
an annual "once over" that included am MRI scan
would save alot of tears along the way
along with hearing nerves, facial nerves, balance nerves
etc, etc, etc,
They do say prevention is better than cure
Best regards
Tony
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russ

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Re: How do you find out if you have NF2?
« Reply #4 on: June 24, 2006, 09:34:02 am »
Hi Amy

  At present, I don't believe screening methods are that accurate with many false/positive blood tests. Seems about 60% accuracy at present.

  One not need have two acoustic neuromas at the same time to be Dx'd NF-2 but this is often the case. Sometimes a contralateral AN will arise years later.

  I'm personally doubtful as to NF-2's occurence in your family

  Russ  ( NF-2 )
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