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KJUNGRL2
04-02-2008, 12:38 PM
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? :confused:

SandyC
04-02-2008, 02:15 PM
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

rtremb
04-02-2008, 02:37 PM
kjungrl2:
I know about NF. I have sent you a personal message.
Ruth

KJUNGRL2
04-02-2008, 03:05 PM
Thanks for answering!

LindaRacine
04-02-2008, 11:32 PM
You'll find some good, succinct information here:

http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm

rtremb
04-03-2008, 02:50 AM
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

KJUNGRL2
04-03-2008, 10:03 AM
Wow! thanks guys! that helps alot!!!!!

green m&m
04-09-2008, 10:20 PM
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.

rtremb
04-09-2008, 11:06 PM
Website Forum for neurofibromatosis:

http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi