Family members with the same condition

[kimmy]

Does anyone have family members who have or have had an AN too?  Strangely, my cousin in NZ, although my second cousin, has just been diagnosed with one. She's in her seventies and so is on wait and watch until another MRI in December. Her surgeon thought it was just a weird coincidence but I wondered if any of you know anything about it being familial.It would be interesting to hear about it.

[Crazycat]

Kimmy,

My paternal grandfather died from a noncancerous brain tumor - probably an acoustic neuroma - in 1941. I know that I had waited so long with mine I didn't have much time left by the time I had any treatment.

             Paul

[Windsong]

Kimmy,

My mother's brother died from a brain tumour. I was a little girl and now that I have an An I can't ask my mom what kind as she passed away quite some ago. I do remember hearing that it was "behind the ear". ..something to do with ear.... my cousins although older than me were also young so i don't know if they would know. They all live overseas.

Windsong

[ppearl214]

Hi Kimmy,

Funny, I mentioned this issue to my neuro-oncologist when I met with him last month. He did mention that if I wanted, he'd make me an appt with a genetics counselor.

My sister (5 yrs older than me) died of a malignant brain tumor (an astrocytoma) in 1969.  So, 2 siblings, one malignant brain tumor, one not. 

Phyllis

[tony]

Russ and I have a theory that the gap between NF2 and normal ANs maybe less than
conventional medical thinking allows - if there was a very slow growing form of NF2,
say 150yrs to create two or more tumours (most of us would be in the promised land long before any diagnosis caught up with us)
This might explain the strange genetic clusters that appear from time to time
Dont worry guys - if theory is right - you have to live another 100 yrs or more till
your next OP !
and no point telling your Doc "I told you so" - he would be gone too !
Have a good weekend
Tony

[nipanddale]

Hi there,

I'm new to this whole thing. Anyway I just met two first cousins diagnosed five years apart.

Wierd, huh?

nip

[momof2]

My mom and I both an AN my mom was first diagnosed with hers in 1974 and had surgery 3 times due to pieces being left.  The 3rd one was removed by HEI and she has been great since.  Mine was removed on May 8th 2006 at HEI.  It was such a shock for me since I have dealt with this since I was a child.  The Dr's say this is a fluke.  They say its not genetic but I still have fear since I have 2 children of my own. Lana

[Joef]

Russ and I have a theory that the gap between NF2 and normal ANs maybe less than
conventional medical thinking allows - if there was a very slow growing form of NF2,
say 150yrs to create two or more tumours (most of us would be in the promised land long before any diagnosis caught up with us)
This might explain the strange genetic clusters that appear from time to time
Dont worry guys - if theory is right - you have to live another 100 yrs or more till
your next OP !
and no point telling your Doc "I told you so" - he would be gone too !
Have a good weekend
Tony

Hey.... I like this idea .. could explain a lot ...

[tony]

Thanks - NF2/AN Genetics is right at the edge of medical understanding
and in any case there clearly are already many more than just the two types
already "officially" named.
Equally for single AN patients there are far too many "genetic clusters" (cousins/uncles etc) just to be a co-incidence. Just a theory of course
- and in any case very slow going (150 yrs or more ?)
so not really a threat.
best regards
tony

[Captain Deb]

My daughter-in-law's father died from "neurofibromitosis" at the age of 30 when she was six years old.  She doesn't know if it was type 2 or not, and neither does her mother.  She seems fine, and is well aware of  if she has any hearing problems to get an MRI. I am rather worried about the grandsons and the genetic implications of passing it down to them.  Anyone know anything about this?
Capt Deb

[tony]

I was sorry to hear of the loss
- the important thing now is to establish if it was NF or NF2
I am unsure about the NF implications - but I (and a few others here)
am quite clear about the genetic implications surrounding NF2
Note NF and NF2 are not the same thing (the NF2 designation was invented
to reduce confusion between the two)
It may have created 101 other confusions.
Best Regards
Tony

[Static]

My father died from an anurism that was caused by a benign tumor pressing against his brain 36 years ago when he was 50.  I was diagnosed with my AN at 43.  My father always had headaches that went unexplained (he also was not one for going to the doctor).  I've had major headaches since I've had my kids.  I was told that AN's were not hereditary so I never pushed it, wouldn't have really changed a whole lot for me.  Just adding my 2 cents