General Category > AN Issues

itching in ear and hives; genetic testing

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Cheryl R:
I last had read that only 5% of ANs are NF2.    Plus when you figure in the a good percentage are the hereditary type than that figure goes down.         Plus testing for NF2 can show a false positive.        I think only a few places in the US even do the testing.   At one time it was only a place in Alabama and is  expensive.    Since then I have heard of some others.    I do not research any more since it has been soon to be 9 yrs since my last surgery.      My life has went on.        Also I feel one can research all you want but what your own individual case may or may not fit in the research.    I am sure not the typical ANer or one with NF2.          That is what is so hard about ANs that there is so much "gray" area of results and how one may do.     I don't regret having had surgery.   It wasn't a real fun time but am lucky in how in time I have done.         Reading this forum can make one think that everyone can end up with horrible long term issues.        That is not the case as so many many do well and back to their life.    Yes one can have the SSD or in occ cases the permanent facial issue but there is some help in fixing some of these problems to some extent.   What you occupation is and even how your personality handles changes play a part.          My journey started in 2001 so have come across many ANers thru internet and in person.       It is horribly scary when one finds about having an AN.    There was not the internet or as much info available so didn't know much pre op.   I am glad in time that more is out for us.                       Cheryl R

Sheba:

cdedmonds - hopefully you've read that most ANs are "sporadic" - i.e. not NF1, not NF2 - it is a non-inherited mutation that happens during the patient's life, which allows the tumor to start growing.  95% of ANs are considered as sporadic.   

there is not much known yet about what causes the sporadic mutations but they think maybe radiation from dental xrays is one possibility.  especially for middle age people - the xrays at dentist were much stronger a few decades ago than they are now.

Willbur:

--- Quote from: Sheba on February 26, 2017, 01:23:18 pm ---
cdedmonds - hopefully you've read that most ANs are "sporadic" - i.e. not NF1, not NF2 - it is a non-inherited mutation that happens during the patient's life, which allows the tumor to start growing.  95% of ANs are considered as sporadic.   

there is not much known yet about what causes the sporadic mutations but they think maybe radiation from dental xrays is one possibility.  especially for middle age people - the xrays at dentist were much stronger a few decades ago than they are now.

--- End quote ---

Interesting theory on dental xrays. I had so many of them when I was a kid, but stop going to the Dentist in my 20's and was diagnosed at 29. I wouldn't doubt if that had anything to do with it.

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