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Speech Pathologist’s Ordeal: Losing Her Voice to Rare Neurological Condition
For Vanessa Abraham, dedicating her career to helping individuals discover their voices was her life’s purpose. An ironic twist of fate struck when she contracted a rare neurological condition that robbed her of speech and induced paralysis. This 45-year-old California resident and seasoned speech-language pathologist, who spent over 15 years guiding children through speech impediments and language acquisition, faced a personal crisis when, in March 2019, a severe flu-like illness brought her world to a standstill.
Sudden Onset and Rapid Deterioration
Initially experiencing intense fatigue, body pain, nausea, and vomiting, Mrs. Abraham soon noticed her voice weakening. Her condition rapidly worsened, necessitating an emergency room visit and, within 48 hours, a transfer to the intensive care unit (ICU) due to respiratory failure and escalating paralysis.
Familiar with the ICU environment from her professional life, Mrs. Abraham now found herself as a patient. She recounted to DailyMail.com, “In the ICU, I was unable to move my arm or hold my head up. My neck muscles were so weak that my neck basically fell to the side, and I had to use a neck brace to hold it up. My condition was undeniably critical.”
“As a speech-language pathologist, I was ironically rendered unable to communicate verbally,” she added.
Diagnostic Uncertainty and Determined Recovery
Initially, medical professionals suspected multiple sclerosis, a central nervous system disorder, or neuromyelitis optica, a rare autoimmune condition affecting the CNS. However, a definitive diagnosis remained elusive for a year.
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Despite the diagnostic uncertainty, Mrs. Abraham remained resolute in her recovery efforts. Driven by her four-year-old daughter, she fought tirelessly, fearing she might never speak to her child again.
Describing her condition, she stated, “I was immobile in bed, unable to use the restroom, dependent on tube feeding via a g-tube, and intubated. Being a speech-language pathologist unable to communicate verbally, I relied on eye gaze, alphabet boards, and text-to-speech applications for communication.”
Communication Strategies During Paralysis
Eventually, a tracheostomy, a surgical opening in the trachea to facilitate oxygen delivery, became necessary. This led to the use of a Passy Muir Valve (PMV) to aid communication.
A PMV is a specialized speaking valve designed to restore verbal communication for individuals with tracheostomies or those on ventilators. It functions by redirecting airflow through the vocal cords, mouth, and nose, thereby enabling speech.
Embracing Holistic Rehabilitation
As her condition persisted without a clear diagnosis, Mrs. Abraham pursued intensive ‘natural’ rehabilitation therapies. She detailed, “For my recuperation, I adopted the most natural approaches available. These included acupuncture, cranial sacral therapy, chiropractic treatments, endermologie [massage for circulation], stretch therapy, and laser treatments.”
She further explained, “I consciously avoided prescription pain medications. However, I did receive monthly IVIG [intravenous immunoglobulin] infusions, as recommended by my neurologist, to mitigate potential medical complications.”
During her ICU and rehabilitation stays, she collaborated with another speech pathologist to regain her ability to speak.
Path to Diagnosis: PCB Variant of GBS
Over several months, Mrs. Abraham gradually relearned swallowing, speaking, and movement. She was discharged home without a diagnosis, advised to consult a neurologist.
Finally, in June 2019, a neurologist at the University of California, San Diego, identified her symptoms, leading to a diagnosis.
“It was months after leaving the hospital that I received a definitive diagnosis, thanks to a new neurologist,” she recounted. “This neurologist recognized my presentation [cervical, brachial, pharyngeal paralysis] within minutes, confidently diagnosing the PCB-Variant of GBS, having encountered it before.”
Mrs. Abraham was diagnosed with the pharyngeal-cervical-brachial (PCB) variant, a rare manifestation of Guillain-Barré Syndrome (GBS).
Understanding Guillain-Barré Syndrome (GBS) and PCB Variant
GBS is a rare neurological disorder where the immune system mistakenly attacks peripheral nerves, disrupting the signal transmission between the brain and body. Typically, GBS-related paralysis ascends from the extremities, but in Mrs. Abraham’s case, it descended from her face and head downwards, complicating initial diagnosis.
“In the ICU, GBS testing was conducted but initially dismissed because my variant presented atypically. Standard GBS paralysis ascends from the feet upwards, whereas mine progressed in reverse, from head to feet,” she told DailyMail.com.
The PCB variant of GBS specifically targets muscles in the mouth, throat, cervical spine, and shoulder nerves. It induces areflexia in upper limbs and arms.
Significant weakness in the mouth and throat can impair speech, swallowing, chewing, and breathing, potentially causing slurred speech, drooling, and facial paralysis. Neck and shoulder weakness leads to difficulty supporting the head, consistent with Mrs. Abraham’s symptoms.
Diagnostic Challenges of PCB Variant
According to BMJ Journals, the PCB variant is often unfamiliar to neurologists, leading to misdiagnosis as brainstem stroke, myasthenia gravis, or botulism.
The precise causes of GBS and its variants are still under investigation, though they are thought to result from an immune response triggered by infection. Links between GBS and COVID-19 vaccination have also been suggested.
GBS affects approximately one in 78,000 people globally annually, and about one in 100,000 in the United States.
While there is no cure for GBS, treatments like plasma exchange and immunoglobulin therapy can mitigate symptoms and shorten recovery if administered early.
Most individuals recover from GBS, often requiring rehabilitation to improve functionality.
Long Road to Recovery and Lasting Impact
Six years post-diagnosis, Mrs. Abraham, now able to speak and walk, described her recovery as “awful, protracted, and necessitating substantial mental health support for severe depression, anxiety, and suicidal thoughts.”
“I was unable to drive for nine months and eat solid food for six months. I was out of work for a year. Persistent pain, discomfort, and fatigue were constant companions. Daily naps and extensive outpatient rehabilitation, gym sessions, rest, and therapy for depression became my routine.”
She further detailed her communication during recovery: “I used a Passy Muir Valve with my tracheostomy. It was the most exhausting and frightening procedure ever. Talking was challenging due to the disease’s nature and excessive secretions, requiring frequent suctioning to use the PMV. The first time I used it, I managed less than a minute due to the immense effort.”
“Before the PMV, I utilized every SLP communication method imaginable – picture pointing, letter boards, and eye-gaze when mobility was extremely limited.”
Life Redefined
Despite her recovery, Mrs. Abraham emphasized that the illness profoundly altered her life.
“I lost my former self and mourned many envisioned futures. Profound depression set in as I yearned to be the mother I had imagined.”
“My activity levels drastically diminished. I could no longer run, hike, bike, or participate in yoga. Physical limitations and safety concerns curtailed these activities.”
“Tube feeding was isolating, preventing me from family meals. Job loss severed my identity as a working mother and speech pathologist. I felt detached from the world I once actively participated in.”
Living with Lasting Effects
Currently, Mrs. Abraham continues to grapple with physical and mental health challenges.
“Six years later, I still attend weekly ICU support groups for PICS [Post-Intensive Care Syndrome] and experience insomnia and anxiety attacks, disrupting sleep.”
Nevertheless, she is moving forward, raising her daughter and operating A Neu Healing, a neurological rehabilitation business assisting patients recovering from neurological impairments.
Mrs. Abraham’s advice: “Surround yourself with supportive individuals who comprehend your experience and validate your grief, loss, depression, and anxiety during challenging times. ICU support groups for PICS and prayer support networks have been invaluable resources for me, connecting me with others who have endured similar tragedies.”