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be iNFormed Optic Gliomas (Revised Article)

Revised article with new and updated information on Optic Gliomas in NF1

Optic Pathway Gliomas (Revised Article)

Optic pathway gliomas are benign (low grade) pilocytic tumors. They may involve any location in the optic pathway, starting on the optic nerve in the orbit (the eye socket), the optic chiasm (the area of the brain where the two optic nerves come together and intermingle) or the optic tracts and optic radiation which are in the posterior part of the brain. They rarely become malignant/cancerous, i.e. they do not spread to other parts of the body.

If all children undergo MRI scans at the time of diagnosis of NF-1, approximately 15% of the children will be found to have optic pathway tumors (OPT). However, only ½ of these tumors will ever cause problems or cause symptoms.  Since the greatest risk period for developing OPT is during the first 8 years of life, children over 10 years of age have an extremely low likelihood of ever developing a OPT.

If your child is diagnosed with an OPT, don’t panic. Progressive disease requiring treatment occurs in about 1/3 of cases. However, it’s impossible to predict what will happen to a specific tumor. Visual outcomes for children with OPT are just beginning to be studied. While preventing the tumor from growing is important, the main goal of therapy is to preserve vision.

We want to thank Robert Listernick, MD of the Children’s Hospital of Chicago, who authored the original article a few years ago and graciously updated it for us with new and current information.

NF Midwest develops “Be iNFormed” articles on various complications and subjects with regard to neurofibromatosis. These articles are written specifically for the NF community without a lot of scientific jargon and with the information that we believe the patient and affected families want and need. We are also careful to have them written and endorsed by experts so that they can be shared with other doctors and seen as a respectable source of information. To find other articles go to nfmidwest.org/beinformed or for a more comprehensive list of resources to nfmidwest.org/learn.

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