Announcement

Collapse
No announcement yet.

Neuro Fibro Matosis

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 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
    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

    Comment


    • #3
      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).

      Comment


      • #4
        Thanks for answering!

        Comment


        • #5
          You'll find some good, succinct information here:

          http://www.ninds.nih.gov/disorders/n...bromatosis.htm
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment


          • #6
            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).

            Comment


            • #7
              Wow! thanks guys! that helps alot!!!!!

              Comment


              • #8
                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


                Comment


                • #9
                  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).

                  Comment

                  Working...
                  X