Living with NF2

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

Discussions

I need advice bad!! Loosing my hearing soon

katieleen
  • By katieleen · New reply April 22, 2014
  • 6 replies
  • I having surgery in a few weeks that's will leave me deaf. As a music major, my hearing is everything. I haven't told my boyfriend or my friends. I'm not ready to lose everything. I need to know that ...

It's Okay

rshoop2014
  • By rshoop2014 · New reply April 19, 2014
  • 5 replies
  • Hiiii! I'm 17 and was diagnosed with NF2 a little over a year ago, and I so far I've had 2 surgeries. First on my spine to removed two tumors and another to remove one on my right ear and my vocal cord ...

what difficulties?

That-one-girl
  • By That-one-girl · New reply April 2, 2014
  • 2 replies
  • I have NF2 and I would like to know what you think effects you the most wether it is phisical or mental for me it is either the pain or the sensetive parts of the neurofibromas. Also say if you have tp1 ...

Help me someone...

RutaZ
  • By RutaZ · New reply March 16, 2014
  • 3 replies
  • Hi everyone. I have Nf2 for about 6 years.. I lost my hearing just before 6 months after my baby birth.. I have never read anything about my ill I just want to run away from it.. but now I have to talk ...

To this in legal states

kylecorey420
  • By kylecorey420 · New reply March 15, 2014
  • 14 replies
  • To those in legal states, what is your opinion on medicinal thc? Either smoking or edibles. I've heard mixed things and would rather hear from someone with experience than political propaganda ...

Need sleep lol

ToBeOrNotToBe007
  • By ToBeOrNotToBe007 · New reply March 7, 2014
  • 6 replies
  • Can anyone recommend medication to stop nerve pain in leg?get it 24/7 mainly around shin and ankle area ...

NF2 and prostrate cancer

wolfdogstwo
  • By wolfdogstwo · New reply March 3, 2014
  • 1 reply
  • I have had NF2 for years. Three brain tumors , tumors in both ears, one brain surgery, one gamma knife, two ear surgery's, two eye surgery for gold leaf, my balance is bad, I am deaf , I can not drive ...

ANYONE IN WISCONSIN?

kylecorey420
  • By kylecorey420 · New reply March 1, 2014
  • 4 replies
  • Is anyone from wisconsin? I moved out here from massachusetts and looking for someone else in Americas Dairyland living living with the same burden ...

weakness

wobblyone
  • By wobblyone · New reply February 28, 2014
  • 1 reply
  • I am wondering if anyone has had any experience with Physical Therapy for nerve damage due to tumors. I and 40 and have a large tumor on my brachial plexus/spine that has weakened the nerves giving function ...

balance

wobblyone
  • By wobblyone · Posted February 27, 2014
  • 0 replies
  • Has anyone had a good experience with solid vestibular therapy? Due to acoustic neuroma removals on both sides, I have no vestibular system. Looking for some recommendations. I'm north of San Francisco ...

BIO#) and BIO 100

CG36
  • By CG36 · Posted February 19, 2014
  • 0 replies
  • Please send information about effectiveness of BIO3 and 100 ...

NF2 and Aloe

CG36
  • By CG36 · Posted February 19, 2014
  • 0 replies
  • Anybody have more information for aloe treatment of brain tumors for NF2 patients. I heard there is a book. Please send specifics ...

Bilateral acoustic neuroma question

katieleen
  • By katieleen · New reply February 13, 2014
  • 20 replies
  • I am a 27 year old female. I've already had removal of one acoustic neuroma and lost all hearing on that side. The other one is growing so large that it has become fatal and they are suggesting full removal ...

others

That-one-girl
  • By That-one-girl · New reply February 11, 2014
  • 4 replies
  • Does anyone you know also have NF type two or type one ...

NF 2

ramcsc
  • By ramcsc · New reply January 28, 2014
  • 4 replies
  • Just looking for moral support I guess ...

looking for similar people

ramcsc
  • By ramcsc · New reply January 22, 2014
  • 8 replies
  • just looking for people with nf-2 to compare conditions and daily life with ...

Radiation/radiosurgery

tinabean925
  • By tinabean925 · New reply January 21, 2014
  • 2 replies
  • As soon as I heard from 2 sources that radiation has not been found to work well on NF2, the neurologist suggests radiosurgery on my sons tumor. Now I'm reading everything about pros and cons. Anybody ...

Husband Wondering if He Should Get Annual NF Checkups

nybride710
  • By nybride710 · New reply December 21, 2013
  • 5 replies
  • Hi everyone, My husband went to the Mayo Clinic in Minnesota last year to see a NF specialist. This was at my insistence after his brother died of a MPNST in July. Everything was fine, thank goodness ...

Cell phones & headsets growth of tumor

truckingangelia
  • By truckingangelia · New reply December 15, 2013
  • 7 replies
  • So I drive a semi truck. I have NF2. My 6 month MRI showed that my left tumor has grown 5mm one way, 6mm the other way since my last MRI. In that 6 month period I went back to driving a truck, using a ...

Type I and Type II

spikestik
  • By spikestik · New reply December 11, 2013
  • 9 replies
  • Sometime ago I posted a question in regards to my NF type II. Many of you said that it would be almost impossible to have symptoms of both.... Congratulations to me September 4th this year I was informed ...

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