Results 1 to 9 of 9

Thread: Neuro Fibro Matosis

  1. #1
    Join Date
    Mar 2008
    Posts
    50

    Neuro Fibro Matosis

    Can anyone shed some light on this for me? My daughter may possibly have this. We had a MRI done last week and go for the results tomorrow! If he does say that is what it is, what kind of questions should I ask?

  2. #2
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    kjungrl2,
    I don't know anything about it other than it is a genetic disorder of the nerves. Tumors grow on the end of nerve fibers thru out the body.

    SandyC
    SandyC

  3. #3
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    kjungrl2:
    I know about NF. I have sent you a personal message.
    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  4. #4
    Join Date
    Mar 2008
    Posts
    50
    Thanks for answering!

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,795
    You'll find some good, succinct information here:

    http://www.ninds.nih.gov/disorders/n...bromatosis.htm

  6. #6
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Good luck with your appointment.

    If the doctor thinks your daughter has NF:

    Ask if the MRI shows any fibromas anywhere near the spine or on the spinal cord. If there is a fibroma in this area ask if it is causing the scoliosis and ask if removal of it would make the scoliosis better. If the scoliosis is being caused by a fibroma I would ask how likely it is the fibroma will grow back if it is removed. I'd also ask what would happen to the spine if the fibroma grows back once the spine is fused?

    Also ask to be referred to an NF specialist (usually a neurosurgeon or neurologist) to have your daughter checked out neurologically. A brain MRI is also needed.

    Also her eyes and hearing need to be checked (this should be done annually). Lisch nodules that the eye specialist would see in her eyes (harmless) would confirm a diagnosis of NF.

    If I think of more questions I will post them.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  7. #7
    Join Date
    Mar 2008
    Posts
    50
    Wow! thanks guys! that helps alot!!!!!

  8. #8
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    359
    why is NF being suspected with your daugther?

    I have NF and my scoliosis is related to a paraspinal tumor I have from T9 to T12/L1 and have also some neurofibromas on my spinal nerve roots with a couple up against the spinal cord. The nerve root tumors hasn't caused any problems so far (no weakness/numbness ect)

    The type of tumor that can contribute to development of scoliosis isn't the typical nerve root neurofibromas. It's usually large plexiform neurofibromas that can really affect the spine.

    If you have any questions, let me know. I try to keep upto date with NF related stuff.
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  9. #9
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Website Forum for neurofibromatosis:

    http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •