Long-Term Effects of Spinal Cord Injuries: What to Expect and How to Manage

A spinal cord injury (SCI) can be a life-altering event, with long-term consequences that extend far beyond the initial trauma. According to the National Spinal Cord Injury Statistical Center (NSCISC), approximately 17,000 new spinal cord injuries occur each year. These injuries not only impact physical function but also affect emotional well-being, personal relationships, and financial stability. Understanding the long-term effects of SCI is crucial for both individuals living with these injuries and their support networks. This knowledge empowers them to proactively manage challenges, optimize their quality of life, and navigate the complexities of living with an SCI.

Understanding the Scope of Long-Term Effects

The long-term effects of a spinal cord injury are multifaceted and vary depending on the severity and location of the injury. The spinal cord acts as a critical communication pathway between the brain and the rest of the body. Damage to this pathway can disrupt motor, sensory, and autonomic functions, leading to a range of challenges. More than 95% of patients with post-acute SCI report at least one secondary problem, and over half (58%) report three or more.

Physical Health Challenges

Loss of Motor Function: Spinal cord injuries often result in paralysis, which can be either tetraplegia (paralysis of all four limbs) or paraplegia (paralysis of the lower body). The level of injury determines the extent of motor function loss. Cervical injuries, occurring in the neck area, typically have the most severe impacts, potentially leading to quadriplegia/tetraplegia. Thoracic injuries, affecting the upper or mid-back, may allow for some arm and shoulder movement. Lumbar and sacral injuries, impacting the lower back, usually result in paraplegia, affecting the hips and legs.
Sensory Impairment: In addition to motor function loss, SCI can also impair sensation. Individuals may experience a decreased ability to feel touch, pain, temperature, or pressure below the level of injury. This sensory loss increases the risk of skin breakdown and injuries, as individuals may not be aware of prolonged pressure or exposure to extreme temperatures.
Bowel and Bladder Dysfunction: SCI can disrupt the nerves that control bowel and bladder function, leading to incontinence, retention, and increased risk of urinary tract infections (UTIs). Urological dysfunction occurs in up to 80% of individuals with a spinal cord injury. Managing bowel and bladder function often requires specialized techniques such as intermittent catheterization, bowel programs, and medication.
Respiratory Complications: Injuries to the cervical and upper thoracic spinal cord can impair the function of respiratory muscles, leading to decreased lung capacity, ineffective cough, and increased risk of pneumonia. Respiratory complications are a principal cause of death during the first year following SCI. Individuals with higher spinal lesions may have both restrictive and obstructive airway disease.
Cardiovascular Issues: SCI can disrupt the autonomic nervous system, which controls heart rate and blood pressure. This can lead to orthostatic hypotension (low blood pressure upon standing), autonomic dysreflexia (a sudden increase in blood pressure), and increased risk of deep vein thrombosis (DVT) and pulmonary embolism (PE).
Skin Breakdown (Pressure Sores): Prolonged pressure on bony prominences due to immobility can lead to pressure sores, also known as bedsores or pressure ulcers. These sores can be painful, prone to infection and difficult to heal.
Spasticity: Spasticity, or increased muscle tone, is a common complication of SCI. It can cause muscle stiffness, spasms, and pain, interfering with movement and daily activities.
Pain: Chronic pain is a frequent secondary complication for individuals with SCI, with up to 80% of patients with SCI reporting to suffer from it. Pain can be nociceptive (musculoskeletal or visceral) or neuropathic (nerve pain).
Bone Health: Immobility following SCI can lead to bone loss and increased risk of fractures, especially in the legs. People with spinal cord injuries are twice as likely to break leg bones as the general population. Bone loss may occur at rates approaching 1% of BMD per week for the first 6 to 12 months after injury.

Emotional and Psychological Well-being

Depression and Anxiety: Living with SCI can significantly impact mental health, increasing the risk of depression, anxiety, and other mood disorders. The challenges of adapting to a new way of life, managing chronic pain, and dealing with physical limitations can take a toll on emotional well-being.
Body Image and Self-Esteem: Physical changes and functional limitations can affect body image and self-esteem. Individuals may struggle with feelings of loss, frustration, and decreased confidence.
Social Isolation: SCI can lead to social isolation due to mobility challenges, difficulty participating in activities, and feelings of being different.
Post-Traumatic Stress Disorder (PTSD): The traumatic nature of the injury event can lead to PTSD in some individuals.

Impact on Personal Life

Relationships: SCI can strain relationships with family, partners, and friends. Adjusting to new roles and responsibilities, dealing with emotional challenges, and managing caregiving needs can create conflict and stress.
Intimacy and Sexuality: SCI can affect sexual function and intimacy. Changes in sensation, motor control, and body image can impact sexual desire, arousal, and ability to engage in sexual activity.
Parenthood: SCI can present challenges for individuals who are parents or who wish to become parents. Physical limitations and caregiving responsibilities may require adjustments and additional support.

Professional and Financial Implications

Employment: SCI can significantly impact employment opportunities and career paths. Physical limitations, accessibility issues, and discrimination can make it difficult to find and maintain employment. Since 2015, about a quarter of persons with SCI have a college degree at the time of their injury, compared with 46% of people who survived 40 years of injury.
Financial Burden: The costs associated with SCI can be substantial, including medical expenses, rehabilitation, assistive devices, home modifications, and ongoing care. Barely half of people with spinal cord injury have insurance at the time of trauma.

Managing the Long-Term Effects of SCI

While the long-term effects of SCI can be challenging, proactive management strategies can significantly improve quality of life and promote independence.

Medical Management: Regular medical check-ups, specialized care from SCI specialists, and prompt treatment of complications are essential.
Rehabilitation: Ongoing physical and occupational therapy can help maintain strength, flexibility, and function.
Assistive Technology: Assistive devices such as wheelchairs, braces, and adaptive equipment can enhance mobility, independence, and participation in activities.
Lifestyle Modifications: Healthy lifestyle choices, including a balanced diet, regular exercise, and smoking cessation, can improve overall health and well-being.
Mental Health Support: Counseling, therapy, and support groups can help individuals cope with emotional challenges, improve mental health, and build resilience.
Peer Support: Connecting with other individuals living with SCI can provide valuable emotional support, practical advice, and a sense of community.
Advocacy: Understanding legal rights and advocating for accessibility and inclusion can empower individuals to overcome barriers and participate fully in society.

Legal Rights and Resources

If a spinal cord injury is the result of someone else’s negligence, SCI victims have the right to seek compensation through a product liability or personal injury lawsuit. This compensation can cover medical expenses, lost wages, rehabilitation, and pain and suffering. Several organizations and resources are available to provide support and assistance to individuals with SCI:

Christopher & Dana Reeve Foundation: Offers a Paralysis Resource Guide, quality of life grants, and information specialists.
Help Hope Live: A nonprofit that provides fundraising assistance to individuals with SCI.
United Spinal Association: Offers peer support groups and advocates for the rights of people with SCI.
Triumph Foundation: Offers grants and support groups in California.

Conclusion

Living with a spinal cord injury presents numerous long-term challenges, but with the right knowledge, resources, and support, individuals can lead fulfilling and meaningful lives. By understanding the potential long-term effects of SCI and implementing proactive management strategies, individuals can optimize their physical and emotional well-being, maintain independence, and advocate for their rights.