Common Questions about Life with a Spinal Cord Injury

Here are some of the most common questions about living with spinal cord injuries, from causes and symptoms to injury levels, incomplete vs. complete injuries, and how to find financial help with out-of-pocket SCI expenses.

We adapted the answers below from firsthand insights from our spinal cord injury client community as well as the trusted SCI community resources at SPINALpedia.com, Shepherd Center, the National Institute on Disability, Independent Living, and Rehabilitation Research, the Christopher & Dana Reeve Foundation, and the National Institute of Neurological Disorders and Stroke.

All other sources we consulted are linked within each section.

Spinal cord injuries (SCI) can cause paralysis, but SCI does not always cause paralysis or permanent paralysis.

The severity of the paralysis depends on the location and severity of the injury.

Paralysis is a common consequence of spinal cord injuries. When the spinal cord is damaged, it disrupts the communication between the brain and the body, leading to a loss of sensation and motor function below the level of the injury. This can result in partial or complete paralysis depending on the severity and location of the spinal cord injury.

Symptoms and paralysis experiences are unique to each individual who sustains such an injury.

Spinal cord injury paralysis is a life-changing diagnosis. However, there are many resources available to help people with SCI paralysis live full and independent lives.

A spinal cord injury (SCI) affects the body by disrupting communication between the brain and the rest of the body.

A spinal cord injury typically damages some or most of the nerves at the site of the injury. When the cells and nerves are injured, the spinal cord can no longer send signals from the brain to the body in the same way.

This disruption can result in paralysis, loss of sensation, changes in bowel/bladder function, respiratory issues, altered sexual function, circulatory system changes, and increased risk of secondary health problems.

These symptoms will vary not just person to person but also day to day, month to month, and year to year. People living with SCI may experience changes to their level of paralysis, mobility, pain levels, and other symptoms throughout their life.

The most common causes of spinal cord injury vary depending on factors such as age, geographical location, and lifestyle choices.

Across the board, the most common spinal cord injury causes are the following.

Traumatic Accidents: Motor vehicle accidents, falls, sports injuries, and acts of violence are leading causes of spinal cord injuries.

Falls: Slips, trips, and falls are particularly prevalent in older adults and can result in spinal cord injuries.

Sports and Recreational Activities: High-impact sports like football, diving into shallow water, and some recreational activities carry a risk of SCI.

Medical Conditions: Non-traumatic diagnoses such as tumors, infections, and degenerative diseases can lead to spinal cord injury.

Yes, there are different types of spinal cord injuries. The two main categories are complete spinal cord injury or incomplete spinal cord injury.

Within these categories, specific types of spinal cord injuries are diagnosed, such as paraplegia (injury primarily affecting the lower body) or quadriplegia/tetraplegia (injury affecting both the upper and lower body).

The severity and location of a spinal cord injury determines the subsequent symptoms, health concerns, and paralysis effects.

Keep in mind that even within the categories above, each spinal cord injury is unique and may result in unique symptoms and effects for someone living with SCI.

The level of paralysis that an individual lives with following a spinal cord injury can be classified with terms including quadriplegia and paraplegia.

Quadriplegia or tetraplegia typically refers to a cervical or C-level spinal cord injury, or the most severe classification of SCI that often results in the largest area of paralysis in the body.

Paraplegia typically refers to paralysis under the cervical level (S-level, T-level, or L-level injuries), which means someone with paraplegia may retain some or all of their upper body control while living with paralysis in the lower half of their body.

Spinal cord injury levels indicate the level of the spinal cord where an injury took place. The level of injury helps determine the extent of impairment and the functional abilities that may be affected.

The spinal cord is divided into four sections: cervical, thoracic, lumbar, and sacral. Each section controls different parts of the body.

Cervical Spine: This section of the spinal cord is in the neck and controls the arms, hands, and shoulders. An injury to the cervical spine can cause paralysis in all four limbs (quadriplegia) or in just the arms and hands (diplegia).

Thoracic Spine: This section of the spinal cord is in the chest and controls the trunk and abdomen. An injury to the thoracic spine can cause paralysis in the legs (paraplegia).

Lumbar Spine: This section of the spinal cord is in the lower back and controls the legs and feet. An injury to the lumbar spine can also cause paraplegia.

Sacral Spine: This section of the spinal cord is at the base of the spine and controls the bladder, bowel, and sexual function. An injury to the sacral spine can cause loss of bladder and bowel control as well as sexual dysfunction.

Within each of those categories, spinal cord injury levels with a letter and number reflect the area of injury based on the vertebrae impacted.

The letters and numbers identify the range of vertebrae impacted by the injury—such as a C1-C4 spinal cord injury.

The lower the number, the higher the areas of the body impacted by the injury. For example, a T1 spinal cord injury impacts a higher area of the body than a T5 spinal cord injury.

Sacral spinal cord injuries are S-level injuries, or S1, S2, S3, S4, or S5 spinal cord injuries.

Sacral spinal cord injuries impact the vertebrae at the bottom of the spinal cord column. These vertebrae help control thigh and buttocks mobility, which means these injuries may or may not impact an individual’s ability to walk or move independently in other areas of the body. Sacral spinal cord injuries often result in the loss of sexual function or sensation.

S1 spinal cord injuries, the highest level of injury in this category, typically cause paralysis from the groin or hip area downward. These injuries typically result in paraplegia, or lower body paralysis, rather than quadriplegia, or broader paralysis in some or all areas below the neck.

Lumbar spinal cord injuries are L-level injuries, or L1 and L2, L3, L4, or L5 spinal cord injuries.

Traveling down the body from lowest number to highest, L1 and L2 spinal cord injuries typically impact the hips, while L5 spinal cord injuries impact the toes. L-level injuries usually result in paraplegia, or lower-body paralysis, rather than quadriplegia.

A thoracic spinal cord injury or T-level injury impacts the spine at the largest upper or central part of the back. Thoracic SCI is labelled T1, T2-T5, or T 6-12.

Typically, individuals with T-level injuries retain hand and arm mobility but live with disruptions to bowel, bladder, or sexual functioning, and these individuals may be able to walk with mobility aids, but every SCI is different.

The highest level in this category, a T1 injury, typically impacts the hands and fingers and all areas from the chest down. At the lowest level, T6-T12, the injury will typically cause paralysis in parts of the abdominals, back, legs, and hips. T-level SCI typically results in lower body paralysis or paraplegia rather than quadriplegia.

Cervical or C-level spinal cord injuries are considered the most severe, injuring the first seven neck vertebrae. Cervical injuries are classified from highest to lowest injury level as C1 to C4, C5, C6, C7, or C8.

C-level SCI often results in quadriplegia instead of paraplegia, or paralysis that impacts most of the body below the neck in some way, including all four limbs—but every injury is different.

At the highest C1 to C4 levels, someone may lose the ability to speak, breathe without an external device such as a ventilator, move their arms, legs, or feet, and control their bowel, bladder, and sexual capabilities.

At the C5 to C7 levels, someone may retain some mobility in their biceps, shoulders, wrists, or arms depending on the injury severity.

At the C8 level, someone may be able to use their arms and fingers but may lose some of their fine finger dexterity.

A “complete” or “incomplete” spinal cord injury classifies an SCI based on whether the spinal cord is completely severed or damaged or only partially impacted.

A complete spinal cord injury reflects a severely damaged spinal cord that may be entirely severed or cut in half.

An incomplete spinal cord injury reflects damage to the spinal cord but the potential for some functionality to remain in nerves in the area of injury. An incomplete SCI may result from the spinal cord sustaining a tear or bruise instead of damage that severs or cuts the spinal cord.

Keep in mind that every single spinal cord injury is unique. Just because an individual is diagnosed with a “complete” spinal cord injury does not mean that there is no possibility for that individual to regain some or all of their mobility, body functioning and control, or independence.

By the same token, an “incomplete” spinal cord injury does not mean a “mild” spinal cord injury or an SCI that does not significantly alter an individual’s body and life.

An individual’s SCI diagnosis may change over time as medical teams and rehabilitation specialists better understand the nature and extent of the injury’s impact on the spinal cord.

Spinal cord injury symptoms vary depending on the location and severity of the injury, and symptoms may be unique to each individual with SCI and not identical or universal across multiple cases.

Here are some of the most common symptoms associated with spinal cord injuries.

Loss of Sensation: Numbness, tingling, or loss of feeling in the affected areas.
Paralysis: Partial or complete loss of muscle function and control below the level of injury.
Difficulty with coordination and balance.
Spasticity: Involuntary muscle contractions or spasms.
Changes in bowel and bladder control, such as incontinence or difficulty emptying.
Sexual dysfunction, including changes in fertility and sexual function.
Respiratory problems, especially with higher-level injuries affecting the chest muscles.
Chronic pain or neuropathic pain.
Difficulty breathing or coughing effectively.
Blood pressure regulation issues.

Mental health concerns are common symptoms after a spinal cord injury and may be temporary, fluctuating, or lifelong. Some of these symptoms include intense and potentially life-threatening feelings of isolation, loneliness, depression, lack of self-worth, lack of hope, and feelings of being a burden on others.

Some individuals with SCI live with PTSD or complex PTSD from the circumstances and moments of their initial injury or from medical trauma sustained during their inpatient or outpatient injury treatment experiences.

Caregiver abuse and toxic treatment from friends, partners, relatives, or other loved ones following an injury may also lead to temporary or lifelong mental health challenges.

Specific symptoms vary widely based on the individual and the extent of the spinal cord injury.

Rehabilitation, medical interventions, and assistive devices are typically part of life for individuals living with SCI to help manage their unique symptoms and improve independence, health, mobility, and quality of life.

Spinal cord injury symptoms and complications will often fluctuate and vary over the course of an individual’s life following an SCI—even within a single year, month, or even day of that individual’s recovery.

Symptoms and complications can vary based on an individual’s unique injury, their location and age, how they engage in rehabilitation and medical support, and the equipment they have access to for home health care and ongoing therapy.

Common spinal cord injury complications include the following.

Paralysis: Loss of movement in the arms, legs, trunk, or face.

Sensory Loss: Loss of feeling in the affected area.

Loss of Bladder and Bowel Control

Spasticity: Muscles are stiff and tight, making it difficult to move certain areas of the body.

Pain: Chronic pain in the affected area.

Autonomic Dysreflexia: A serious condition that causes a sudden and uncontrolled increase in blood pressure.

Difficulty Breathing: Damage to the nerves that control the muscles required for breathing.

Changes in Sexual Function: Impotence in men and infertility in both men and women.

Heart Problems and Irregular Heartbeat

Urinary Tract Infections

Gastrointestinal Disruption

Dangerous Pressure Sores and Ulcers

Psychological Problems: Depression, anxiety, and post-traumatic stress disorder (PTSD).

No, everyone does not experience the same spinal cord injury recovery stages. The recovery process is different for every individual with SCI and depends on several factors, including:

The severity of the injury
The location of the injury
The level of the injury
The individual’s age, health, and fitness level
The individual’s ability to engage in rehabilitation on an ongoing basis

Some people with SCI may experience significant recovery primarily during the early stages following their injury, while others may continue to make progress for years or even decades after their injury.

An individual may choose to pursue or not pursue certain rehabilitation pathways based on one or more of these factors, or they may have to navigate physical limitations and health challenges that make some recovery pathways more difficult to pursue at certain times.

In many cases, SCI recovery options will depend on an individual or family’s ability to cover the cost of essentials such as home modifications, durable medical equipment, caregiving, medical travel and relocation, inpatient or outpatient rehabilitation services, adaptive vehicles, and more.

That’s why our nonprofit exists to provide trusted medical fundraising to individuals living with spinal cord injuries and other life-impacting diagnoses.

Spinal cord injury treatment typically starts as soon as possible after the time of injury and continues over an individual with SCI’s lifetime.

At the time of injury, medical professionals will typically try to minimize the impact of the injury on an individual’s body, which can sometimes lead to life-changing improvements in the individual’s mobility and prognosis. This process usually involves preventing further motion in the spine, head, and neck and ensuring the individual’s body can continue to take in oxygen, whether independently or with help from external devices such as a ventilator.

Surgery typically takes place after an injury to remove excess fluid, which can push down on the spine to exacerbate the injury, and remove any fragments that may remain in the body after injury due to breakage in the bones of the spine.

Spinal fusion surgery may help to repair or stabilize some vertebrae. Spinal cord injury traction is an inpatient technique to pull the vertebrae back into alignment to reduce pressure for better spinal positioning after injury.

Doctors may prescribe or administer medications that can sometimes reduce spinal damage or combat inflammation. Some individuals with SCI continue to take medication to manage symptoms associated with their injury over a short-term or lifelong recovery process.

To help with regaining as much mobility, sensation, and independent body control as possible, medical teams may recommend functional electrical stimulation or FES. FES applies electrical pulses to muscles impacted by spinal cord injury paralysis, which can improve fine motor skills, mobility, breathing, and bowel and bladder function for some individuals with SCI and may help reduce the likelihood of pressure sores or urinary tract infections.

FES devices can be used at medical or rehabilitation facilities or purchased for in-home use.

In addition to immediate and as-needed medical intervention, spinal cord injury treatment typically hinges on ways to improve mobility, muscle strength, breathing, speech, independence, self-care, and participation in everyday activities.

These ongoing treatment pathways often include:

Exercise-based rehabilitation
Training on mobility devices such as wheelchairs, walkers, or power chairs
Adaptive communication devices and technologies
Occupational therapy
Recreational therapy
Vocational therapy

Spinal cord injury treatment may be pursued:

Inpatient in a hospital or rehabilitation center
Outpatient with medical travel to certain facilities
At home with equipment and therapy
Or a combination

Recovery can be mental as well as physical, supporting an individual’s wellbeing and mental health in addition to their physical capabilities, mobility, and independence.

SCI treatment can also include pursuing clinical trials and cutting-edge research opportunities that involve experimental procedures or new technological developments used under medical monitoring.

Spinal cord injury treatment can be:

Equipment-based
Research-based
Technology-based
Rehabilitation-based
Or a combination

Unfortunately, across all these cases, spinal cord injury treatment costs are typically not fully covered by insurance.

As a result, individuals living with SCI may be forced to fundraise for recovery expenses to continue to pursue the tools, equipment, and treatment pathways they need to heal, live, and thrive.

In addition to assisting with physical needs and fighting back against ableism and inaccessibility, you can help someone with a spinal cord injury by pointing them to resources to help cover the immense out-of-pocket cost of life with paralysis.

You can refer someone with SCI to Help Hope Live for medical fundraising at: https://helphopelive.org/get-started/apply/

You can find our free and comprehensive Catastrophic Injury Resource Directory here.

The cost of spinal cord injuries (SCI) varies depending on the severity of the injury, the level of care required, and the individual’s insurance coverage. In the U.S., the estimated lifetime cost of SCI is between $44,000 and $115,000.

A study published in the Journal of Spinal Cord Injury Medicine in 2023 found that the average cost of SCI-related healthcare in the U.S. is $347,000 in the first year after injury.

The cost then decreases to an average of $184,000 per year for people with high tetraplegia, $113,000 per year for people with low tetraplegia, $69,000 per year for people with paraplegia, and $42,000 per year for people with incomplete motor function.

SCI costs vary depending on multiple factors ranging from insurance coverage to level of injury to an individual’s priorities for comfort, health, mobility, independence, or home health care.

Medical Expenses: This includes the cost of hospitalization, surgery, emergency care, and ongoing medical care.

Durable Medical Equipment: This includes wheelchairs, power chairs, walkers, braces, and other equipment that helps people with SCI move and function more independently.

Home Modifications: This may include ramps, widened doorways, and accessible bathrooms.

Lost Wages: Many people with SCI are unable to work or are limited in their ability to work. This can lead to a significant loss of income and earning potential.

Other Expenses: This may include the cost of transportation and accessible vehicles, personal care assistance and caregiving, and assistive technology.

Yes! Help Hope Live is a national nonprofit with four decades of community-based fundraising experience. We are dedicated to helping you and your family offset the out-of-pocket costs associated with a spinal cord injury through fundraising.

Every spinal cord injury fundraising client and their community receives no-cost one-on-one fundraising help for a lifetime of need, including customized materials, tailored guidance, and event planning support.

Spinal cord injury fundraising campaigns with Help Hope Live offer significant advantages over other options for medical crowdfunding, including tax deductible donations for donors, medical verification for donor confidence, direct bill pay to lighten your administrative burden, and administration of funds raised so that they typically won’t jeopardize your eligibility for other benefits like SSDI or Medicaid.

Whether you need to fundraise for medical care, rehabilitation, medications, adaptive equipment, accessible transportation, home modifications, or something else that enhances your health and quality of life, you don’t have to fundraise alone. Our nonprofit is here to help.

You can get started today by submitting an initial application to us about your situation.

Apply

Visit our Catastrophic Injury Resource Directory to find additional sources of support for life with paralysis, including direct sources of grants and financial aid to supplement your fundraising efforts with us.

These hand-selected and reputable resources are free to access for both Help Hope Live clients and non-clients.

Written by Emily Progin