Background and Rationale: The Need for Recognition of Brainstem Compression and Neuroplasticity-Based Rehabilitation

Why This Initiative Matters

Brainstem compression, often associated with conditions such as craniocervical instability (CCI), Chiari malformation, and upper cervical instability (UCI), is a critical yet under-recognized and frequently misunderstood medical condition. Patients experiencing these conditions often suffer from a wide array of debilitating symptoms—dizziness, dysautonomia, chronic fatigue, difficulty swallowing, headaches, and cognitive dysfunction—due to impaired function at the level of the brainstem and upper cervical spine.

Despite the severity of symptoms, these patients are often neglected, misdiagnosed, or dismissed by medical professionals. Many are labeled with functional neurological disorders, somatization, or anxiety before structural causes are ever investigated. These individuals—many of whom have connective tissue disorders like Ehlers-Danlos syndrome—often report years of medical gaslighting and fragmented care, despite the presence of structural instability or compression confirmed on imaging.

Gaps in Recognition and Research

There is a glaring lack of clinical awareness and medical education surrounding brainstem compression and its implications. Even fewer specialists are equipped to evaluate or treat it effectively. This has led to a significant gap in diagnosis, treatment, and research, leaving patients underserved and misunderstood.

Compounding this is the limited body of peer-reviewed literature, especially studies that investigate rehabilitation strategies for patients with mechanical and neurological dysfunction related to brainstem compression. Standard physical therapy models often fail to consider the sensitivity and complexity of these cases, leading to poor outcomes, symptom flares, or even harm.

Why Neuroplasticity Matters

The Finding Functional Foundations™ (FFF) approach offers a pioneering framework that addresses these shortcomings. Rooted in principles of neuroplasticity, proprioceptive training, and biofeedback, this method empowers patients to retrain their nervous system, improve postural alignment, stabilize the cervical spine, and reduce central sensitization. Rather than focusing on traditional strengthening (which may exacerbate symptoms due to shearing forces at the craniocervical junction), FFF emphasizes:

  • Gentle, precise motor learning strategies

  • Proprioceptive cueing to promote cortical remapping

  • Biofeedback to support nervous system regulation

  • A graded, neurophysiologically informed progression toward functional independence

This approach is especially suited for patients with brainstem compression because it respects mechanical limitationswhile offering a way to restore neurological resilience and functional control over time.

The Call for Research and Recognition

There is an urgent need for systematic research to validate the lived experiences of these patients and to formally evaluate interventions like FFF. Understanding brainstem compression from a neuromechanical and rehabilitative lens is essential to:

  • Develop effective, evidence-based treatment protocols

  • Guide clinical decision-making and interdisciplinary collaboration

  • Improve diagnostic timelines and reduce harm from mismanagement

  • Foster policy change and insurance recognition for complex neuromusculoskeletal disorders

This initiative represents a necessary step toward shifting the medical narrative, embracing complexity, and honoring the reality of patients living with brainstem compression. Through collaborative education, research, and clinical innovation, we aim to transform how this population is treated—and ultimately how they heal.

Conclusion

The Initiative aims to catalyze this transformation by merging artistic storytelling with scientific inquiry. Through cross-sector collaboration, we seek to elevate awareness, promote research, and empower patients who have long been underserved. This initiative represents a necessary step toward shifting the medical narrative, embracing complexity, and honoring the lived realities of those with brainstem compression.

This initiative draws on the clinical expertise of our Chief Medical Outreach Officer, Susan Chalela, PT, co-author of “Presentation and physical therapy management using a neuroplasticity approach for patients with hypermobility-related upper cervical instability: a brief report” (Chalela & Russek, 2023). Her work informs our emphasis on functional retraining, proprioception, and biofeedback in complex neurological rehabilitation.

For collaboration inquiries, sponsorships,

Contact: Amy Wang-Hiller | amy@iamywanghiller.com

Founder of pre-501(c))(3) - InclusiVibe™️ Foundation