In October 2020, my life changed irrevocably. A medullary stroke, a rare and transformative event, struck without warning, leaving me with Wallenberg Syndrome. Reflecting on my journey—from the hospital to today—I’m struck by how the subtle symptoms of this condition reshaped my understanding of my body and resilience. One memory from my hospital stay stands out: I repeatedly complimented nurses for their skill in drawing blood or performing finger sticks for glucose tests. “I didn’t feel a thing,” I’d say, unaware this wasn’t their expertise but a loss of surface pain sensation on half my body—a hallmark of Wallenberg Syndrome (Biousse & Newman, 2021).
The Stroke That Changed Everything
The medulla oblongata, a critical brainstem region, governs functions like swallowing, breathing, and sensation processing. A stroke in this area, as I experienced, causes immediate and disorienting effects. My stroke, triggered by a blockage in a small artery supplying the medulla, led to lateral medullary syndrome, or Wallenberg Syndrome (Lui & Xu, 2023). The symptoms were peculiar: difficulty swallowing, affected speech, and a sensory split. My right side could feel touch and pressure like my left, but pain and temperature sensations were absent. This sensory loss was subtle; my right side didn’t feel foreign—it felt normal for most sensations, just missing the sting of pain or warmth of heat.
I was rushed to the hospital, where doctors stabilized me. In the intensive care unit, I was too overwhelmed to notice sensory changes. The focus was on stabilizing my condition, with tests and treatments dominating those early days. It was only later that I understood my brain no longer registered surface pain or temperature on my right side.
The Moment of Realization
The extent of my condition became clear after returning home. One day, my wife handed me a soft drink from the refrigerator. Holding it in my right hand, I thought she’d grabbed it from the pantry—it felt room temperature. Curious, I switched it to my left hand and was startled: the can was ice-cold. The contrast was jarring. At my next follow-up, I described this and other symptoms to my neurologist. He confirmed, “You have the classic symptoms of Wallenberg Syndrome” (Biousse & Newman, 2021). This diagnosis clarified the sensory world I’d been navigating.
Understanding Wallenberg Syndrome
Wallenberg Syndrome results from damage to the lateral medulla, often due to a stroke in the vertebral or posterior inferior cerebellar artery. The medulla’s role in relaying sensory information means a stroke disrupts sensation interpretation (Lui & Xu, 2023). A key feature is crossed sensory loss: pain and temperature sensation are lost on the opposite side of the body from the stroke (my right side), while the same sensations are impaired on the same side of the face. Thus, my right hand couldn’t feel a cold can, but my left cheek might not register a hot towel (Biousse & Newman, 2021).
Origin of the Name
Wallenberg Syndrome is named after Adolf Wallenberg, a German neurologist who first described the condition in 1895.
He detailed a case of a patient with symptoms like sensory loss, ataxia, and swallowing difficulties following a stroke
in the lateral medulla. His work linked these symptoms to occlusion of the posterior inferior cerebellar artery, laying
the foundation for understanding this syndrome (Pearce, 2000). The eponym honors his contribution to neurology, though
it’s also called lateral medullary syndrome to reflect its anatomical basis.
Other Symptoms
Beyond sensory loss, Wallenberg Syndrome presents diverse symptoms. I experienced balance issues, though not spinning vertigo, which makes walking unsteady. My speech was affected, sounding strained. Swallowing was challenging, requiring a temporary feeding tube due to dysphagia—a common issue (Lui & Xu, 2023). Nystagmus, or involuntary eye movements, disrupted my ability to focus, causing visual instability. Some patients experience hiccups, nausea, or gait ataxia, reflecting the medulla’s role in coordinating motor and autonomic functions (Biousse & Newman, 2021). These symptoms vary, making each case unique.
Finding Community Support
Early in recovery, I found a Facebook group, “Wallenberg’s Syndrome or Lateral Medullary Syndrome”. With just under 900 members, this community has been a lifeline. Sharing experiences with others facing this rare condition offered practical tips for managing sensory loss and emotional support for tough days. The group’s stories helped me feel less isolated, reinforcing my place in a resilient community.
Adjusting to a New Normal
Leaving the hospital was both a relief and a challenge. Wallenberg Syndrome rarely resolves fully (Lui & Xu, 2023). While swallowing improved with therapy, sensory loss persisted. I had to relearn how to trust my body. Tasks like grabbing a cold drink or showering required caution to avoid burns or injuries on my right side. Even now, I sometimes forget to test temperatures with my left hand, a habit I’m still refining.
Physical and occupational therapy were crucial. Therapists taught me to use my left hand for temperature checks and to inspect my skin for injuries. Speech therapy improved swallowing and speaking, though my voice tires easily. Balance exercises reduced my reliance on a cane, though uneven ground remains tricky.
Emotionally, the journey was tough. The sensory split—normal touch but no pain sensation—was a constant reminder of the stroke. I grieved my former self while feeling grateful for surviving. Counseling, alongside the Facebook community, connected me with others who understood. Their stories—of relearning daily tasks or navigating social settings with affected speech—gave me hope.
Living with Wallenberg Syndrome Today
Four years later, I’ve adapted. Sensory loss on my right side is part of my routine. I try to test temperatures with my left hand and check my right side for unnoticed cuts or bruises. My balance has improved, though I avoid crowded places. Swallowing is easier, but I eat slowly and avoid tough foods.
Wallenberg Syndrome shifted my perspective. I’m more attuned to my body’s signals, even incomplete ones. I appreciate the brain’s resilience in adapting to disruptions. I have to laugh at the quirks—like my hospital compliments to nurses or the soft drink incident. These moments remind me how far I’ve come.
Raising Awareness
Wallenberg Syndrome is rare, affecting few stroke survivors, but its impact is profound. Limited awareness, even among medical professionals, can delay diagnosis (Biousse & Newman, 2021). My experience underscores the need to recognize signs: balance issues, sensory loss, swallowing difficulties, or nystagmus. Early intervention, like clot-busting drugs and rehabilitation, can improve outcomes.
To those newly diagnosed, I advise patience. The road is long, but small victories—like swallowing a sip of water or walking without a cane—add up. Lean on medical teams, therapists, loved ones, and communities like the Facebook group. Embrace humor in absurdities, like praising a nurse for a “painless” needle you couldn’t feel.
Nursing Care Plan for Wallenberg Syndrome
As a nurse with over 30 years of experience, I recognize the importance of structured care plans for clients with Wallenberg Syndrome. Below is a nursing care plan tailored to address key issues, outcomes, and actions.
Client Issue 1: Impaired Sensory Perception (Pain and Temperature)
Description: Client cannot feel pain or temperature on one side of the body, increasing risk of injury (e.g., burns, cuts).
Outcome: Client will remain free from injuries by using compensatory strategies within 4 weeks.
Actions:
- Assess client’s ability to identify pain/temperature daily (Biousse & Newman, 2021).
- Teach client to use unaffected side to test temperatures (e.g., water, food).
- Inspect affected side for injuries during each shift.
- Provide visual reminders (e.g., wristband) to prompt safe practices.
Client Issue 2: Impaired Swallowing (Dysphagia)
Description: Client has difficulty swallowing, risking aspiration or malnutrition.
Outcome: Client will swallow safely without choking within 6 weeks.
Actions:
- Assess swallowing ability with speech therapist weekly (Lui & Xu, 2023).
- Position client upright during meals.
- Offer soft, small bites and thickened liquids as recommended.
- Monitor for choking signs during meals.
Client Issue 3: Impaired Balance and Mobility
Description: Client has balance issues and nystagmus, increasing fall risk.
Outcome: Client will ambulate safely with assistive devices within 8 weeks.
Actions:
- Assess balance and gait daily (Biousse & Newman, 2021).
- Provide cane or walker for mobility.
- Clear walkways of obstacles.
- Refer to physical therapy for balance exercises.
Evaluation: Monitor progress weekly, adjusting actions based on client’s response. Document outcomes in electronic health records for continuity (Hebda et al., 2023).
Looking Forward
Living with Wallenberg Syndrome is a daily balancing act (literally), but it’s a testament to adaptability. My stroke in October 2020 was a turning point, but it didn’t define me—it reshaped me. I’m still navigating this split-body world, where one side feels everything and the other feels less. Yet, in that contrast, I’ve found strength, gratitude, and appreciation for human resilience.
References
- Biousse, V., & Newman, N. J. (2021). Ischemic stroke syndromes of the brainstem. Neurologic Clinics, 39(2), 355–378.
- Hebda, T., Hunter, K., & Czar, P. (2023). Handbook of informatics for nurses & healthcare professionals (7th ed.). Pearson.
- Lui, F., & Xu, A. (2023). Wallenberg syndrome. In StatPearls. StatPearls Publishing.
- Pearce, J. M. S. (2000). Wallenberg’s syndrome. Journal of Neurology, Neurosurgery & Psychiatry, 68(5), 570.