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Living with NF2

Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 2 (NF2).

LOOKING FOR OTHERS WITH NF2

By cyndie · New reply January 10, 2009
5 replies
I'M LOOKING FOR SOMEONE WHO HAS NF2 TO TALK TO ABOUT DAILY LIFE WITH ALL IT'S ACHES AND PAINS AND DIFFICULTIES ...

(dis) abilities

By angelle1 · New reply January 9, 2009
7 replies
I had gamma-knife (laser) surgery on my left acoustic neuroma, and later had to take steroids to make the swelling go down a regain partial facial-muscle function; I have not felt normal since. Constant ...

Ghostwriter update! 1-7-09

By seesnow · New reply January 8, 2009
1 reply
Hi guys! I had a message from Michael's mom when I got home today. Michael was accepted and moved yesterday to a facility for rehabilitation. It's called Wingate in Fishkill, NY and she said that it's ...

Ghostwriter Update 12-23-08

By seesnow · New reply January 1, 2009
3 replies
Hi all! I wish I had better news to report, but there hasn't been much of a change in Michael's status since the last time I spoke with his mom. His breathing is better and on his own a lot, but the respirator ...

Just a brief introduction from South Louisiana

By mshollieb · New reply December 29, 2008
19 replies
Hi All, My name is Hollie. I'm 24 and have NF2. I was first diagnosed with at age 9. More importantly though, I'm a big sister, college graduate, thrill seeker, ambitious professional, aspiring world ...

Ghostwriter Update 12-18-08

By seesnow · New reply December 22, 2008
4 replies
Hi guys!I talked to Michael's mom again a little bit ago. His surgery was done late in the day yesterday. They did the tracheotomy as well as the feeding tube into his stomach. They also stitched his ...

Ghostwriter Update 12-15-08

By seesnow · New reply December 18, 2008
7 replies
Hi guys!Here's the latest on Michael! He's been in the hospital for 3 weeks today. He's had a breathing tube since last Wednesday because he isn't strong enough to breathe on his own. His breathing is ...

Send Ghostwriter a Card!

By seesnow · New reply December 17, 2008
7 replies
Hello all! My dear friend Michael Gergley aka Ghostwriter is in the hospital in NY awaiting surgery on his acoustic neuroma on Tuesday morning at 8:00 a.m. He's been a long time supporter of the NF community ...

Good news for Ghostwriter (Michael) - WOOHOO!

By seesnow · New reply December 11, 2008
6 replies
Hi all! I have very good news to report, but not many details! The surgery was a success. I have no clue how much of the tumor they got -just that his mom was beaming over the telephone. My card with ...

What do you think? NF-VHL or something else?

By dizzybee · New reply October 31, 2008
4 replies
Hello all, new to this site. I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed ...

Anyone have plexiforms get smaller?

By oldeschool · New reply September 5, 2008
4 replies
My son has lumps that are showing up on many of his extremities, one of his doctors mentioned that they might be plexiforms. All of the rest of the doctors that we have seen have dismissed this idea because ...