Where is everybody??????

[mindyandy]

I have posted under NF2 (scared).....I havent heard from anybody......I feel so alone I know....what can you really say.....I got my results from spinal scan.....A O.K. other than buldging discs....YEAH!!!!! HELLO THERE TO ALL MY FELLOW AN'ers. 

Mindy

[ppearl214]

*runs in... gives Mindy a BIG OLE' HUGGLE, scurries back out*



phyl

[mindyandy]

 ;)Thanks Phyl!!!! I needed that!!!!!!!

[ppearl214]

denada... glad to help. I'll take bulging disc over An anyday!  YAY YOU! 

[1wareagle]

Hi Mindy,

     I hope I never become a NF2. With that said I never look under that topic. It's a scary thought that I don't want to think about right now. I am still trying to recover from my first and hopefully my last AN.

     So glad to hear that you only have a budging disc. That's bad enough but at least it is not another AN.


Congratulation (I think),
Ellis

[debora]

Mindy,

Sorry I never read posts under NF2 I guess because I don't have it.  It certainly isn't because I don't care, guess I just stick my
head under the covers as the thought of it scares the sh-- out of me. 
God Bless you and other NF2'ers (SP?) you certainly have my respect for dealing with such a difficult diagnosis.
Deb

[mindyandy]

Thank you very much everybody. I'm glad that I am not diagnosed with NF2....I hope it stays that way. Yes it scares the pants off me just thinking about it. This past week I have been so....petrified...(spelling?). I have my CK appointment Jan 7th....yeah!!!!! I'm glad I have such great friends here
THANKS EVERYBODY!!!!!

[Cheryl R]

         One less worry for you now and I wish no NF2 for anyone.      NF2 was not in my older years plan and altering my life for it is not fun.                   Good luck with your CK and hope all goes well
                                             Cheryl  R
           

[Dealy]

Mindy- I was one that replied to your request Scared because you thought you might be an NF2. I am an Nf2 and yes I spent 3 months getting scared and having a small case of depression reallywhe I frst found out in 2005 that I had a 2nd tumor. However it has been almost 3 years since my original diagnosis I have learned to live with this condition. I can think of more devastating news like someone with ALS, Just like anything else you learn too deal with the cards that are dealt too you and go on living life to the fullest. Is it easy-NO. I cannot listen too music anymore-radio is out-concerts-movies-but their are things I still can enjoy-like the touch and concern of my wife etc. A word of warning for those who think this cannot happen too you. I had my first AN 18 years ago and had it surgically removed. At that time I was told that was an isolated case so I never worried about another AN happening ever- I showed no signs of being an NF2. Wrong. So I guess my best advice is not too dwell on it but sometimes the obvious signs are not so obvious- I am a living example of that. My surgeon told me 18 years ago that my 1st tumor was out and gone.WRONG-Even he expressed surprize when another was found in 2005-18 years later-so sometimes it might be advisable too read things under Nf2 just to be informed. Thanks_Ron

[mindyandy]

Thank you Ron. I will always have the thought in my head. What road did or are you taking with the 2nd one? Was it a regrowth or is it on the other side? I am just wondering. I am having CK done Jan. 7th so I hope all goes well. I'm sure everybody here does think about NF2 from time to time knowing that it could happen whether its 20 years from now. I'm glad to hear that you are a very strong person and that you have a loving wife by your side. Thank you for the information. It really helps. 
Mindy

[candtlaw]

HUGS you.............. life altering expierences...... sigh....... helps to have supportive friends and people who understand what one is going through. BIG HUGS.......  You ever need me PLZ don't hesitate and drop a email............ how is tht family of yours doing?? 

[Dealy]

Mindy-Thanks for your input and concern. Yes- I have an understanding and loving wife that looks after me daily. I am so thankful for her. I bought her 3 white Roses in appreciation a couple of weeks ago and you would have thought I just bought her a Diamond Ring. I just wanted to show how much I really do love her. I am not by nature an emotional person-but being an NF2 sure changes your perspective on things in life-especially being able to hear-period. What I would not give now for my one sided deafness. Too answer your question. My first tumor was on the left ear at 1.5CM. Back in 1988 their was no radiation in the States available that their is now-so within 3 months I opted for surgical removal. It has not regrown but I am deaf from the surgery on that ear plus they removed my Balance and Hearing Nerve. My tumor now is on the right ear. I had no symptoms prior too my face going numb at work one day in 2005. That is how it was found. However-my ENT-the dummy that he is missed the obvious markers which I have-little tiny growths on my face that I have had for at least the last 10 years. My current neuro told me these are markers for NF2. So I had these while the tumor was growing in my head which at discovery was 2.4 or 2.5CM depending what doctor you believe. I had radiation last summer. It is showing signs of dying-but being an NF2-I May never be out of the so called woods. Thansk for all-Ron

[sgerrard]

Hi Mindy,

We're all just taking longer naps these days, what with holiday food and it being cold and dark outside all the time. 

I'm glad to see the posts from Ron as well, I'm sure NF2 is no fun, but it is always inspiring to see that even that is managable with the right attitude. Hang in there, Ron, hopefully there is no such thing as NF3. 

You can always speculate about what else you might have, or what else you might get, but I suspect that quite a few people show some of the preliminary markers for NF2, but turn out not to have it or to ever get it. It is just one of those things that crops up from time to time, and all you can do is go on with life, and deal with the news if and when it shows up.

Meanwhile, Mindy, have a good holiday season. It will be January before you know it, and soon after that you will be a postie too.

Steve

[Jeff]

Mindy,
I apologize for not having responded sooner. And, great news about your scan results!! I wish you well.
Jeff

[Jim Scott]

Hi, Mindy:

I'm sorry for the prior lack of response to your post but I think you now know that, in answer to your original question (where is everybody?), you're certainly not alone.  We're here - and we're concerned for you, even if we don't all visit the NF2 forum very often, like folks who don't visit the gym very often, even though we know we probably should.   

Keep us informed (on this forum), try not to allow your fears to control you and know that you have friends here.   

Jim