Newly diagnosed with NF2

Information and support for anyone recently diagnosed with neurofibromatosis type 2 (NF2).


Wondering about other NF2 cases ..

  • By anhnf2 · New reply March 18, 2014
  • 3 replies
  • Hello, I just wanted to share my story and see what anyone else has gone through. I feel like I could have been diagnosed back in middle school when I had a bump on my face biopsied and came back as a ...

My 16yr old has NF2

  • By tinabean925 · New reply January 17, 2014
  • 8 replies
  • I am terrified. My son had a cat scan for a possible head injury and they found tumors all over him. He has to go for another MRI bc they didn't get the whole spine and can see some tumors at the top ...

Spinal cord tumours

  • By taffy222 · New reply July 30, 2013
  • 23 replies
  • I recently posted that I had several tumours found on my spine during an MRI to find the root of my foot pain. Well last week my daughter started to develop weakness/numbness in her legs and trunk of ...

multiple spinal tumours

  • By taffy222 · New reply June 22, 2013
  • 2 replies
  • Hi All I had a recent MRI to try to find the cause to my peripheral neuropathy in my left foot and instead of telling me I had sciatica I was told they have found several small tumours on my spinal cord ...

Single neurofibroma but not neurofibromatosis

  • By Jasiek · New reply May 27, 2013
  • 11 replies
  • Hi all! I'm new to this site and was just wondering if anyone has had similar problem. I have a single case of benign neurofibroma but not neurofibromatosis of any type. There is no family history, I'm ...

ISO best NF2 doctor in California

  • By Run-The-Race · New reply April 13, 2013
  • 10 replies
  • I live in the San Francisco area and am looking for the best NF2 doctor in the area. Any suggestions? Does anyone have a list of the best NF2 treatment centers in the US? I'm willing to travel. Thanks ...

my girlfriend hates my nf2 or me?

  • By nf2micka · New reply February 5, 2013
  • 32 replies
  • Hey me an my so call girl had a barny an she sent me a photo of a very bad case of nf1 an called me festy an mentally challenged cuz of my neuromas.has anyone here been made to feel like shit.kinda hard ...

nf2 an doctors that dont have a clue

  • By nf2micka · New reply January 31, 2013
  • 2 replies
  • Hi I'm mick im 29 an got diagnosed with nf2 about a year ago and live in Australia.does anyone else have this condition in aus I really need a proper doc to look at my mri results not a junior radioligist,I've ...

nf2 an doctors that dont have a clue

  • By nf2micka · New reply January 30, 2013
  • 9 replies
  • Hi I'm mick im 29 an got diagnosed with nf2 about a year ago and live in Australia.does anyone else have this condition in aus I really need a proper doc to look at my mri results not a junior radioligist,I've ...

NF Network NF2 Webinar

  • By NF_Network · Posted October 31, 2012
  • 0 replies
  • The NF Network is pleased to present an all new NF2 webinar to be held Wednesday evening, Nov. 7th. It will be presented by Dr. William. Slattery, of House Ear Institute. The focus will be on advancements ...


  • By flnut38 · New reply August 9, 2012
  • 2 replies
  • I have had nf1 sence I was little I am just shy of my 43 birthday learned today I have nf2 as well. and I am on chemo cause of breast cancer, its just keeps comming ...


  • By joseahernandeza · New reply July 31, 2012
  • 2 replies
  • Hello, My son is 25 years old suffering NF2, lost hearing in one ear, and his hearing on the other ear is deteriorating. He has a 2.7mm tumor being treated in the House Ear Institute of Los Angeles CA ...

? for my NF2ers!!!

  • By truckingangelia · New reply July 11, 2012
  • 4 replies
  • Hey to all the NF2ers!! Hope you all are well!! Keep your head up! So I was just wondering if any of you have ever applied for SS DIsability. I spoke to a SS Disability lawyer a few weeks ago and he said ...

14years old boy diagnosed

  • By OP · New reply July 1, 2012
  • 8 replies
  • Hello, our 14 years old son will be probably diagnosed with NF2. When he was 9 years old, doctors found tumour in IV. ventricle. It was benign tumour atypical papillon plexus grade 2. There was total ...

Recently diagnosed and Looking for support!

  • By truckingangelia · New reply June 24, 2012
  • 7 replies
  • Hello Everyone! I am brand new to this website. I was recently diagnosed with NF2 as of yesterday! I am just here looking for support and more information from others who are in the same boat as I. I ...


  • By nf2warrior · New reply May 27, 2012
  • 8 replies
  • I am from India. I am a divorcee recently married. My wife has a son through her ex husband and the son is living with me. Her ex husband's father had NF1 and ex husband's younger brother NF2 now nearly ...

New to the board

  • By maw80919 · New reply April 13, 2012
  • 4 replies
  • Hello all, I'm Melody and new to the board. I have 5 wonderful children a fantastic hubby who grew up across the street from me and we've been married 41 years. When I was in the hospital for other problems ...

Dr Karen North

  • By kripsen · New reply March 3, 2012
  • 15 replies
  • Hi everyone, I've googled Karen North and haven't found anything of interest. Am I right in understanding she's an Australian doctor who specialises in NF2? If anyone can give me any more contact/other ...

Genetic testing for NF1 & 2 and new to board

  • By hummerbird · Posted January 24, 2012
  • 0 replies
  • Hi, I'm new here and my name is Helena (57) and I'm from Oregon. I'm currently being tested for NF1 and 2. I have had all over body pain (feels like a bad sunburn) since 2001. I've been dxed with fibro ...

NF1 and NF2

  • By kripsen · New reply January 18, 2012
  • 24 replies
  • Hello everyone, I'm new around here - my son, 11yo, has recently been diagnosed with nf2. As I scroll through all the posts and discussions, I'm interested that nf1 and nf2 have been put together on this ...

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