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head/scalp fibromas & assoc. head pain

  My niece is a 13 y.o. WF with NF 1. She has an optic glioma which has her legally blind. VA--OS only to light/darkness, OD <20/200. She also has multiple fibromas in her head and scalp. She has a 2 previous surgeries for the scalp lesions. She recently began experiencing L-sided head and eye pain, which only responds to narcotics. She has seen her neurologist who feels the trigeminal nerve is being irritated and has elected to Tx her with Tegretol. After 5 days, she has had little change in her pain and is still using Tyl#3 along with the Tegretol. She is to F/U in 2 wks. My question-- if she does have a neuroma compressing/growing on her trigeminal nerve, 1) can we realistically expect the Tegretol to resolve her pain?, 2) if not, what are her other options?

Dear C.C.
Your niece likely has a pathologic process which involves the trigeminal
nerve. She needs to have an MRI to confirm this. The tegretol will not
treat this problem I can assure you of that. If she does have a neuroma
or any othe tumor she needs to have this treated appropriately.
This includes either surgery to remove the tumor or stereotactic
radiosurgery (Gamma Knife surgery) to stop the progression of the tumor.
If she does have a tumor something can be done.
If she is in the Cleveland area, you may wish to contact the office of
Dr. Joung Lee (head of Skull Base surgery) who has  vast experience in
treating these disorders. I hope this helps.
Good Luck!

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