Question Title: NF type 2 and hamartomas of the white matter

Forum: Neurology Forum
Topic: Neurofibromatosis

Posted by CCF Neurology MD on August 12, 1997 at 10:39:05:

In Reply to: NF type 2 and hamartomas of the white matter posted by Maggie Goldstein (please respond care of....) on July 06, 1997 at 13:08:05:

: My (recently found) neurologist suggested that an initial MRI indicates the presence of hamartomas in the "white matter" of my brain.

Can you elaborate on:

1) the area of the brain this indicates

2) some possible implications of the diagnosis (if verified)

3) the available treatment alternatives for hamartomas and the primary disease, which has been diagnosed as type 2 neurofibromatosis

Thank you very much.

P.S. Are you aware of, and can you recommend, any specialist(s) in the Philadelphia (PA) vicinity who deal with adults with NF-2?
I am finding it exceedingly difficult to find someone with non-pediatric expertise.
=Dear M. Goldstein, I Wiil Answer your qiestions as numbered:1. Unfortunately, the white matter is non-cellular portion of your brain and spinal cord and composes the bulk of those structures. Without additional information from you (e.g. An MRI report), I can not further elaborate.
2. Without additional information, I can not even speculate on implications of your diagnosis (see also 1).
3. The avaible treatment (that are FDA approved) for this disorder are limited to surgery and in very specific conditions (e.g. Bilateral optic nerve gliomas), radiation therapy.
For more information on alternative treatments and a possible physician referral in the Philadelphia Area, you should contact Neurofibromatosis, Inc., Contact Person:Mary Ann Wilson, at (800)942-6825 or http://members. gnn.com/NFINC/page1.htm

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