Author Topic: Give me some idea on NF2  (Read 2960 times)

BRS89

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Give me some idea on NF2
« on: March 20, 2013, 06:55:46 pm »
I am 44, just had my right side AN taken out on January 23rd. After going through it, I was looking at trying to get back to a normal life.

Today I found out my first cousin, who is older than me, has been diagnosed with an AN.

Does this mean I am NF2? It can't be a coincidence, right? What steps should I take.

Susan A

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Re: Give me some idea on NF2
« Reply #1 on: March 20, 2013, 07:22:33 pm »
What bad luck that you and your cousin both have ANs! There may be something genetic in it, but it's incredibly unlikely that it's NF2. There are specific diagnostic criteria for NF2 - the usual one is that you have to have TWO ANs. Not 2 in a family - 2 in the same skull ;-) If you only have 1 AN, you would have to have more than one meningioma along with it, or a confirmed diagnosis of NF2 in a close family member.
I don't think you need to do anything at this point other than what your docs have told you to do as normal follow-up to the AN. At least your cousin has someone who knows what s/he is going through! I hope your recovery is going well!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

BRS89

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Re: Give me some idea on NF2
« Reply #2 on: March 20, 2013, 08:47:48 pm »
Thank you so much for taking the time to write me back. I admit, I was completely shocked to hear about her diagnosis. She called to get some advice about what to do, and as a postie, I was able to tell her what to expect. She was really relieved to talk about it.

When I got off the phone, I told my wife, "what the heck is going on genetically on that side of the family?", then I remembered 5% of AN's are NF2. We never discussed this with my neurologist, we only watched the MRI's for 2 years and when it was time, had my surgery. But, it just seemed too coincidental, and I was wondering if their are cases where someone is NF2, does not know about it, has an AN, and at some point later the second one shows up on the other side. That would be a kick in the nose, to be sure, and my empathy for others sure has skyrocketed over the past few years.


Cheryl R

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Re: Give me some idea on NF2
« Reply #3 on: March 21, 2013, 02:06:54 pm »
There have been a few posts over time of people who have relatives also who find they have an AN.    One is sisters, another is a gal and I think grandfather.         The others I can't remember.           I am  one who had the AN and later had one show on the other side and was not there when the first AN showed up.      Plus a 3nd on the same side as the first.     So I am NF2 and no one in my family has had any that we know.   This all started for me back in 2001 so has been quite a while now and hard to believe it has been that long.     This is my 5th year since my last surgery and my appt next month for my yearly MRI and dr visit is actually on the 5th anniv date of April 17th.
The previous post is right that true NF2 has to have more than one tumor and some have multiple issues of the skin lesions,eye issues and brain tumors.                                             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