Celebrating 41 Years

Optic Pathway Giloma and Vision Testing

Optic Pathway Gliomas are often referred to as OPG and may affect those with neurofibromatosis type1 (NF1). In most cases OPG are benign and may never cause an issue, however in some cases they could lead to visual impairments or loss. When and how often to screen for OPG has been somewhat a confusing matter for many. As of right now, there is not a set standard screening schedule for OPG.

An article wrote by Cynthia J. Campen, MD and David H. Gutmann, MD, PhD provides some insight into how often vision screening show be performed. Routine vision exams are useful in tracking changes and concerns so that other exams such as an MRI could be used if there is a concern of an OPG. In the article it is suggested that those who have NF1 and are under the age of 10 should have yearly eye exams performed by an experienced ophthalmologist. Over the age of 10 years old it is suggested that exams should be maintained every two years until the age of 18.

If an OPG is diagnosed the need and frequency of MRI testing and visual assessments will depend on the size of the tumor, location of tumor, and symptoms of the client. Although there is no set standard, it has been reported that many physicians perform eye examinations and vision testing every three months for the first year after a diagnosis. Testing and screening often decrease after 1 year depending on the client. It was also noted that MRI testing often follow that same schedule.

Just like many other health concerns, screening and testing schedules vary greatly based on the individual’s needs and the physician’s expertise so always talk with your doctor about your concerns and discuss what would work best for you and your health.

You can read Cynthia J. Campen, MD and David H. Gutmann, MD, PhD article by clinking here.

Diagnostic Criteria of Neurofibromatosis Type 1 (revised 2021)

A diagnosis of NF1 can be given if an individual has two or more of the following manifestations: • Six or more café-au-lait spots* (brown skin spots) greater than 5mm in pre-pubertal children or greater than 15mm in post-pubertal individuals • Freckling in axilla (armpit) or groin • Two or more neurofibroma tumors of any type, or one plexiform neurofibroma • Two or more Lisch nodules or two or more choroidal abnormalities • Optic pathway glioma (tumor of the visual pathway) • A distinctive osseous lesion such as: sphenoid dysplasia; anterolateral bowing of tibia (tibial dysplasia); or pseudarthrosis of a long bone • A pathogenic NF1 gene variant • A parent with NF1 by the above criteria *At least one of the two pigmentary findings (café-au-lait spots or freckling) should be bilateral.

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