Author Topic: NF2? How am I okay?  (Read 8476 times)


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NF2? How am I okay?
« on: September 07, 2015, 07:56:30 pm »
Two ANs, the left one is 33 x 37 x 41 mm?? That's massive isn't it? I am mostly deaf in that ear (key word being mostly, I can still hear deep sounds). Right one is much smaller, I have stable hearing on that side. I have had audiograms for years, and my left side hearing was stable (mild loss) for years, but it started going down a year ago and then reached this level 6 months ago. Headaches at times, but never too bad. No facial issues at all.

I am 18 years old, I started university, I get great grades (even with a hearing loss). I don't get it, should I feel horrible? I feel like everyone says to be worried about NF2, but now I'm worried that I'm not worried enough. When I started to lose hearing, the doctors said it would likely have no cause. But it does (as we found out). The internet says that people with NF2 can end up with all sorts of problems, but I guess the only thing that bothers me is I wanted to go to med school, but now I don't know. If I'm healthy enough to get through an internship, I could do something like radiology or pathology that has a much lower amount of patient interaction? That might be okay for someone with no hearing or in a wheelchair.


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Re: NF2? How am I okay?
« Reply #1 on: September 08, 2015, 03:30:11 am »
Hello TheStruggle,

"Worried for not being worried enough" – you are just young  :), and it's fine not to be too worried. You should not feel horrible; instead, you should continue to analyse all possible solutions and to plan your future.

I don't know much about your condition; no one knows exactly how you will go through it. But I'm sure that you will, and that you will have the opportunity to make a great career. Just don't give up!

I want to tell you my father's story – he was a young ambitious man when he was tuberculosis diagnosed, and he was only 18. It was during the WW2, so few or no efficient drugs, no efficient treatment. Two years after, thanks to the efforts of medical staff, and the strength of his will, he was cured, and ready for a new life. Now, he is a 90 years old, happy man, with all his dreams fulfilled.

Best wishes,


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Re: NF2? How am I okay?
« Reply #2 on: September 08, 2015, 03:05:14 pm »
Worrying is over-rated.  Some people seem to enjoy worrying.  If you are not worried, don't worry about it ;D

Seriously, you have a serious condition that could cause you much grief, but worrying about it does exactly nothing for you.  It's important to be realistic about these things, and you are, but prattling on and on with a self-centered sob story is not necessary.  It is counter-productive.  There are too many drama queens on the internet and you should be proud of yourself that you are not one of them.

If the the actual practice of medicine were to become too much for you at some point, you could do research.  With all of the gnome stuff that I don't understand that is going on these days, and you being 18, you might just be the one to come up with a solution for NF2.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.


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Re: NF2? How am I okay?
« Reply #3 on: June 17, 2016, 09:20:39 pm »
Heya! Im so worried that i have NF2 since my ears feel clogged up a bit but I cant seem to find any reasons behind it - i woke up with my left ear feeling slightly blocked but hearing is not affected and one week later i couldnt tell the pressure difference between both my ears because i realize even my right ear feels slightly blocked. again, hearing is not affected but maybe just a little bit. Im just very very worried. did ur symptoms of both ears occur within a week or so????