YSG: Eye Issues, Exercises

Kimia led the discussion on visual disturbances that can occur after a stroke. 15 attended.

Below is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay, please ask for the link on the YSG Slack channel.

The presentation from the meeting is included below for reference.

Quick recap

The meeting’s main focus was on stroke-related visual disturbances, where participants shared their experiences with various vision problems and discussed the importance of considering eye issues in stroke survivors. The group also addressed challenges in accessing specialists and the coordination of care between different medical specialists after a stroke.

Summary

Post-Stroke Visual Disturbance Management

The meeting focused on visual disturbances that can occur after a stroke, with Kimia leading the discussion. She explained that stroke can affect parts of the brain controlling vision, eye movement, and visual understanding, with studies showing two-thirds of stroke survivors experience some type of vision problem. Participants shared their experiences, including Kellee who lost peripheral vision in her left eye and Michelle who experienced visual field loss and dizziness. The group discussed various eye exams and treatments they had undergone, including visits to ophthalmologists, neuro-ophthalmologists, and vision therapists. Kimia presented common vision problems after stroke, such as visual field loss, eye movement issues, and visual processing changes, and the group discussed how these symptoms can impact daily activities and require ongoing management.

Stroke Symptoms and Vision Impact

The group discussed various symptoms associated with strokes, including vision problems, dry eye syndrome, and light sensitivity. Lisa shared her experience of losing a quarter of her vision after a TIA and a full stroke, but she did not notice the vision loss. Kimia emphasized the importance of considering eye problems in stroke survivors, as symptoms may not always be apparent. Stephanie asked about the relationship between stroke-related symptoms and neuro-ophthalmology, and Kimia explained that while some symptoms may be directly related to eye issues, others could be due to broader neurological impacts.

Visual Phenomena and Stroke Connections

The group discussed various visual phenomena and their potential connection to strokes, including light sensitivity and migraines. Kimia explained that positive visual phenomena, such as flashes of light or shimmering patterns, can be a precursor to another stroke, particularly if it occurs in the thalamic or occipital regions. Stephanie inquired about specialists for stroke-related headaches, and Susan suggested looking into vascular neurologists, though she was unsure if there was a specific specialist for stroke and migraine combination.

Specialist Access Challenges Discussion

The group discussed challenges with accessing specialists, particularly for conditions like stroke and neuro-ophthalmology. Michelle shared her experience of a long wait for an appointment and suggested that having a neurologist refer patients as stroke-related could expedite the process. Stephanie expressed frustration with the complexity and lack of communication among specialists, while Kimia explained that insurance restrictions often require patients to see a primary specialist before being referred to a higher-level specialist, causing delays. Susan proposed leveraging her position as the group head to potentially expedite access to specialists and mentioned plans to discuss winter-related health measures in the next meeting.

Stroke Care Coordination Challenges

The group discussed the challenges of coordinating care between different medical specialists after a stroke, particularly regarding the intersection between neurological and ENT issues. Stephanie shared her experience with multiple specialists including neurologists, ENTs, and neuro-ophthalmologists, while Kimia explained that the limited number of neuro-ENT specialists makes coordination difficult. The discussion highlighted how the U.S. healthcare system often separates specialists rather than integrating their expertise, and concluded with Kimia’s recommendation that patients should bring their full medical history to each appointment to educate their doctors about their stroke-related conditions.