Recently we hosted a Power Hour on Vision After Epilepsy Surgery. Dr. Linda Lawrence, member of our scientific advisory board and a pediatric ophthalmologist who is an expert in brain-based visual impairment as well as vision assessments, joined us. So did Monika Jones, our executive director and member of the education committee for Perkins School for the Blind.

We learned a lot about different aspects of vision after epilepsy surgery. Most of our conversation was about hemispheric procedures like hemispherectomy and hemispherotomy. This blog post summarizes what we learned and gives you resources you can use.

What we talked about

You see with your brain: Our eyeballs are just the receptors of information that is eventually processed in the brain.

What happens if you remove one hemisphere or one occipital lobe? You lose your entire field of vision on the opposite side. This is called homonymous hemianopia and is a permanent, irreversible form of cortical visual impairment (CVI).

CVI: It’s important that your child’s school team knows that your child has a CVI and how it impacts them. This is known as a cortical visual impairment, a cerebral visual impairment, or a neurological or brain based visual impairment.

Eyeball movement: If your child’s motor strip (located in the frontal lobe) was damaged, removed, or disconnected that can also affect the movement of their eyeballs, which can impact the ability to read or look at a computer screen.

Limits of neuroplasticity: Neuroplasticity cannot cause the field of vision to be recovered. But it may help with the recovery of some aspects of vision, such as visual processing.

Assessments: Comprehensive and frequent assessment is essential, especially while the child is young. Assessment should include acuity, visual fields, visual neglect, visual-motor function, and visual processing.

• Many schools will do a “Learning Media Assessment” where the Teacher of the Visually Impaired, perhaps along with a low-vision optometrist, will look at how the child is accessing visual information. Is the child going to learn visually? How are they using their vision and adapting? Are they going to need magnification? Are they going to need tactile supports? Auditory supports? A combination of all of these accommodations?
• If you disagree with your school district’s vision or orientation & mobility assessments, take a look at this sample letter to request an independent educational evaluation.

Compensatory strategies: Compensatory strategies such as a head turn and more can be taught or encouraged in the child.

School: In a school setting, the child needs not only to have a visual impairment but it also needs to be determined that their visual impairment impacts their access to the curriculum. You and your child’s vision teacher can watch the recording of this Power Hour or Vision After Occipital Lobectomy and Related Surgeries to learn about the impact on reading and safety, and other impacts in the educational setting.

Vision loss over time: A recent paper showed that in adults with hemispherectomy, over time some lose acuity in the eye opposite the removed hemisphere and the visual field also gets smaller. It appears to be something that’s irreversible. As your child is getting older, make sure that they’re followed by a neuro-ophthalmologist to monitor if they are starting to lose acuity in that opposite eye.

Hydrocephalus: For children who develop hydrocephalus, it’s important to note that the pressure can cause optic nerve damage.

Strabismus: Another condition is called strabismus where the eye opposite the surgery can start to wander out; this is generally corrected with surgery. Uncorrected, the child could completely lose vision in that wandering eye over time.

Beware: Be careful with interventions that are not backed by evidence-based research (such as vision therapy, prism glasses, synoptic light therapy, etc.). While these interventions may be beneficial for your child, they might not be. You have to decide where you want to put your time and money. Free programs like eye search training may be worth a try.

It’s essential to do rehabilitation for the whole child in a manner that’s appropriate and unique for that child, based on thorough and proper assessments.

Key links and resources:

• An important webinar for every TVI to view is Vision After Occipital Lobectomy and Related Surgeries
• Helpful Educational Strategies For Children With Homonymous Hemianopsia (The Brain Recovery Project):

Other vision resources

Check out our “(Almost) Everything List” for a complete list of vision resources.