Tethered Cord Syndrome in Adults: Symptoms and Treatments

Tethered cord syndrome (TCS) is a neurological condition where the spinal cord becomes abnormally fixed within the spinal canal, leading to stretching and tension. While often associated with childhood, TCS can manifest and be diagnosed in adulthood. Its varied and sometimes subtle symptoms frequently delay diagnosis, making understanding this condition the first step toward effective management.

Understanding Tethered Cord Syndrome in Adults

Tethered cord syndrome refers to a group of neurological disorders where the spinal cord is pulled taut, restricting its normal movement within the spinal canal. The spinal cord typically floats freely, allowing it to move up and down with body growth and daily activities like bending and stretching. When tethered, this normal movement is hindered, causing the cord to stretch and potentially sustain damage over time.

The spinal cord extends from the brainstem down through the vertebral column, ending in a bundle of nerves called the conus medullaris, usually around the L1 or L2 vertebral level in adults. A thin, fibrous strand known as the filum terminale extends from the conus to the tailbone (sacrum), helping anchor the spinal cord. In TCS, an inelastic structure, such as a thickened filum terminale, fatty growth (lipoma), scar tissue, or other malformations, attaches to the spinal cord, preventing its proper ascent and movement.

While often congenital, meaning present from birth due to developmental malformations like spina bifida, TCS symptoms can emerge in adulthood. This delayed onset can occur because the spinal cord has been gradually stretching over many years, or due to factors like trauma, degenerative spinal changes, or even previous spinal surgeries that create scar tissue, exacerbating an underlying congenital tethering. Acquired tethering, though less common, can also develop from spinal cord injuries or tumors that create adhesions, blocking fluid flow and leading to cyst formation within the cord.

Recognizing the Symptoms

The symptoms of adult tethered cord syndrome can be diverse, progressive, and often mimic other conditions, which contributes to diagnostic delays. Pain is a common complaint, particularly persistent lower back pain that may radiate into the legs, hips, groin, or perineum. This pain often intensifies with activities that stretch the spine, such as bending forward, sitting cross-legged, or holding weight.

Neurological deficits in the lower extremities are also frequently observed. These can include muscle weakness, numbness, or sensory disturbances that may not follow a typical nerve pattern. Patients might experience leg muscle atrophy, gait disturbances, or changes in foot appearance, such as higher arches or curled toes.

Bladder and bowel dysfunction are common, affecting over 70% of adult patients. These issues can manifest as urinary frequency, urgency, a feeling of incomplete emptying, poor voluntary control, nocturia, and urge or stress incontinence. Bowel control issues, including fecal incontinence, can also occur. While foot and spinal deformities are more typical in pediatric TCS, they are less common as presenting symptoms in adults.

Diagnosis and Treatment Approaches

Diagnosing tethered cord syndrome in adults involves a thorough clinical evaluation and specialized imaging studies. A medical history focusing on symptoms and their progression is gathered, and a physical exam assesses muscle strength, sensation, reflexes, and any visible signs on the lower back. Neurologists and neurosurgeons are often involved in this diagnostic process.

Magnetic Resonance Imaging (MRI) of the spine is the primary diagnostic tool for visualizing the spinal cord and identifying structural abnormalities. An MRI can show if the conus medullaris is abnormally low (below the L2 vertebral level) or if the filum terminale is thickened. Other tests, such as a CT scan with myelogram or urodynamic studies, may provide additional detail or assess specific symptoms.

Treatment for adult tethered cord syndrome depends on the underlying cause and symptom severity, with surgical intervention being the main approach when symptoms are present and progressing. The primary goal of surgery, known as detethering, is to relieve tension on the spinal cord and prevent further neurological damage. This involves a laminectomy, where a portion of the vertebral bone is removed to access the spinal cord. The neurosurgeon then identifies and releases the inelastic tissue or adhesion tethering the cord, such as a thickened filum terminale or scar tissue.

While surgery carries potential risks, including cerebrospinal fluid leakage, wound issues, or neurological deterioration, studies report favorable outcomes, particularly for pain and motor function. Improvement in back and leg pain is seen in a significant percentage of patients, sometimes as high as 78-95%. Bladder and bowel dysfunction may also improve, though sometimes to a lesser degree than pain or motor symptoms.

Life After Diagnosis

After a diagnosis of tethered cord syndrome in adulthood, long-term management involves monitoring, rehabilitation, and ongoing symptom management. Many patients experience stabilization or improvement in symptoms following surgical detethering, especially concerning pain and motor functions. The extent of improvement varies, with better outcomes often observed when surgery is performed earlier in the disease course.

Some individuals may experience persistent symptoms despite surgery, necessitating continued management. Rehabilitation, including physical therapy, improves muscle function, gait, and overall mobility. Pain management strategies, such as medication or other therapies, can help address lingering discomfort.

Regular follow-up appointments with medical professionals, including neurosurgeons and neurologists, are important to monitor for symptom recurrence or potential complications. The risk of retethering is generally low in adults, estimated at 1-3%. Lifestyle adjustments can also contribute to a better quality of life, focusing on activities that minimize spinal tension and support overall well-being.

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