Spinal Cord Injury for Primary Care Physicians (PCPs) and other Outpatient Physicians
Written by Gerda Maissel, MD, BCPA, CPE, a Physical Medicine and Rehabilitation doctor and former health system leader who founded a personal patient advocacy business, My MD Advisor. She is now known as “Dr. Gerda, the Medical Sherpa” for her work guiding clients with paralysis through the health care system.
There are approximately 18,000 new cases of spinal cord injury (SCI) every year and 1.4 million people living with spinal cord injury in the USA. With appropriate medical care, people with spinal cord injury can lead fulfilling and active lives. It is likely that you have patients in your practice with SCI or another type of paralysis. This brief guide is intended to help you feel more comfortable taking care of patients with SCI. More information is available in the reading list. All Christopher & Dana Reeve Foundation materials are available free of charge to health care professionals and their patients.
Nomenclature (levels and types of SCI)
There are several terms used to describe the levels of spinal cord injury. The most common are tetraplegics (sometimes quadriplegics) or paraplegics. Quadriplegia and tetraplegia mean that all four limbs have weakness. Paraplegia means two limbs (the legs) are involved.
Tip: Tetraplegics often have partial use of their arms. A person who can bend their elbow could be a tetraplegic rather than a paraplegic.
Office Etiquette
All patients appreciate eye contact, an introduction, an explanation of your role, and being spoken with directly.
If someone is a wheelchair user, they may consider their chair to be an extension of themselves. Ask permission before you touch or push their chair, even when you are trying to be helpful. Be mindful that people who are wheelchair users lose their independence when their wheelchair is out of reach. If they are out of their wheelchair on the exam table, avoid moving their chair without permission. If you do move their wheelchair, remember to put it back.
Because many people with paralysis are unable to get up on a standard exam table, having at least one room in your office with a high low table in your exam room will be extremely helpful. Too many people with SCI are not fully examined due to exam table limitations.
Tips: Avoid assuming the companion will answer for a person using a wheelchair.
Ask the patient if they need any accommodations for your interview and examination.
It’s Not Just Muscles and Nerves – Body systems affected by SCI
Bowel
Bowel function is usually changed after a spinal cord injury and a “bowel routine” is used to empty the bowels adequately and predictably. The importance of bowel continence to a person’s dignity cannot be overstated. With the right bowel routine, continence can usually be achieved and maintained.
Bowel routines (aka bowel programs) typically involve a combination of softeners, fiber and or mild stimulants plus a trigger for a bowel movement. Triggers to initiate a bowel movement include suppositories, enemas or digital (finger) stimulation. Those with flaccid paralysis (low thoracic and lumbar level injuries) may need manual bowel evacuation and an emphasis on maintaining solid stools to prevent anal leakage. The best frequency of a bowel routine is one that is similar to their preinjury stool frequency.
Common bowel complications include rectal fissures and hemorrhoids, both internal and external. Treatment is the same as for the able bodied. Fissures should be referred to surgeons promptly.
Tips: Regular bowel emptying, triggered at a consistent interval, will result in continence for most individuals.
Fecal occult blood tests may be less dependable because of the frequency of anal manual manipulation and suppository use.
If the patient is wearing a diaper, consider initiating a conversation about their bowel and bladder routine. Ask if they wear the diaper regularly or just when out of the house.
Urinary Tract
Urinary tract issues occur in nearly everyone with a spinal cord injury. People with injuries above T12 will have an upper motor neuron bladder (aka a hyper reflexic bladder) and incontinence because the bladder contracts frequently. Sometimes the bladder will contract against a closed urethral sphincter (dyssynergia) resulting in the potential for urine to reflux into the kidneys. People with lumbar and sacral level spinal cord injuries will generally have a lower motor neuron bladder with poor detrusor contractility (aka areflexic bladder). They experience overflow incontinence and high post void residuals when their bladder is not emptied frequently.
Many people with SCI use catheters to empty their bladder. Intermittent straight catheterization and indwelling Foleys are commonly used. Males also have the option of an external catheter (aka condom catheters or Texas catheters), although these can cause penile skin breakdown. There is an elevated risk of urinary tract infections (UTIs) with catheter usage and deciding when to treat a UTI in an individual with SCI depends on both symptoms and urine testing.
Pharmacologic options to improve bladder function in people with hyper reflexic bladders include alpha blockers to decrease outlet resistance, anticholinergics and beta adrenergics (aka overactive bladder medications) or botulinum toxin (Botox) to decrease bladder contractions.
Urologists can offer additional options for bladder management including suprapubic catheters, urostomy, sphincterotomy, bladder augmentation and surgical creation of a continent catheterizable channel (Mitrofanoff procedure).
Recurrent urinary tract infections (UTIs) are common regardless of the type of bladder program. A UTI can present as a dull pain, fever/ chills, increased spasticity, nausea or autonomic dysreflexia. The clinician’s threshold for considering urosepsis should be lower than for other patients.
Tips: Because of the increased likelihood of the presence of antimicrobial resistant organisms, it is useful to obtain a urine culture prior to initiating empiric antibiotics.
Urology is helpful for both baseline urodynamic testing and for ongoing urologic management.
Skin
Pressure injuries are a frequent problem for people with SCI. Pressure injuries can become life threatening and may be under emphasized by patients and families. If a pressure injury develops, a referral to a wound care center is recommended. Typical locations are the sacrum, ischial tuberosities and feet.
Prevention of pressure injury is via frequent skin checks (daily visual inspection by self or a caregiver) and pressure relief (every 20 minutes when sitting and every two hours in bed). Pressure relief can be done in a wheelchair by leaning sideways. For higher level quadriplegics having an appropriate tilt-in-space wheelchair is useful for conducting pressure shifts. Pressure reduction cushions and mattresses are helpful but not invincible.
Cellulitis also occurs in people with SCI and may present later than for sensate individuals. A thorough examination of the skin is recommended in the presence of unexplained fever, increased spasticity or autonomic dysreflexia.
Blood Pressure Changes
A variety of hemodynamic changes are common with people with spinal cord injury.
Episodically Elevated Blood Pressure
Autonomic Dysreflexia (AD) One of the most important blood pressure conditions to be aware of in people with SCI, AD occurs in people with cervical and high thoracic (T6 and above) spinal cord injury.
People experiencing an episode of AD have elevated blood pressure (BP) (rise in systolic baseline BP greater than 20 mm Hg or > 10 mm Hg in diastolic BP) (of note, in order to diagnose AD, it is essential to know the baseline BP, which can be significantly lower in individuals with high thoracic and cervical SCI). Bradycardia may be present at the same time as an elevated BP. AD is considered a medical emergency.
AD can present with a pounding headache, flushing above the lesion level and goose bumps (piloerection) below the level. Increased spasticity, nasal stuffiness, metallic taste, visual blurring, and/or a feeling that something is very wrong (anxiety) may also be present.
AD is caused by an irritant that should be removed promptly if possible. The most common causes are urinary or fecal retention. Other causes include UTI, skin infection, bone fracture, heterotopic ossification, epididymitis, deep venous thrombosis (DVT) or use of nasal decongestants or other stimulants. Menstruation and ejaculation can also trigger AD.
Treatment for AD includes sitting the person up, loosening clothing, removing tight stockings, shoes, and abdominal binders, and addressing the cause. If BP remains elevated, nitroglycerine topical, nifedipine 10mg bite and swallow or captopril 25mg sublingual can be used. Patients with recurrent episodes of AD should be considered for prescriptions of the preferred medication to use in case of an episode at home.
Tip: When the obvious cause of someone’s AD episodes is not found, consider imaging to rule out an abdominal cause or missed fractures, heterotopic ossification, or severe osteoarthritis.
Low Blood Pressure
People with SCI may have lower resting BPs. Orthostatic hypotension is common. Thigh high stockings and abdominal binders may help, as well as a slow transition to an upright position. Midodrine (ProAmatine) and fludrocortisone (Florinef) can be prescribed. These medications are often started early during a person’s recovery and may not be needed permanently.
Respiratory
Respiratory problems are a leading cause of death in people with spinal cord injury. All patients with cervical and thoracic injuries can be assumed to have diminished lung capacity. People with complete SCI at C1 – C3 levels will be unable to breath without a ventilator because their injury level is above the exit of the phrenic nerve, which innervates the diaphragm. Those with C3- C 5 cervical SCI will potentially have impairment of diaphragmatic movement as well as the same impairments experienced by those with lower-level injuries. The intercostal muscles are innervated from T1- T11 and the abdominal muscles are innervated from T7- L1. When the intercostal and abdominal muscles are impaired, the ability to fully inspire or to generate a forceful cough will be reduced. This in turn increases the risk of pneumonia.
Tips: Encourage the use of assisted cough techniques. Consider sleep apnea diagnosis work up and use of CPAP or BiPAP earlier than for non-spinal cord injured patients.
People living with quadriplegia have a higher risk of sleep apnea and should be tested for it if they are experiencing daytime fatigue.
Low bone mass and Osteoporosis
Bone loss is common in people with spinal cord injury, with a resultant increase in fracture risk. A baseline bone density test is useful. Fractures may present as autonomic dysreflexia, swelling, redness, pain, or vague feelings of unwellness.
Spasticity
Spasticity is commonly experienced by people with spinal cord injury. Tight and spastic muscles can limit function and increase the potential for contracture development. Involuntary movement can occur and can be confused by hopeful individuals with voluntary movement.
Spastic movements are sudden flexion or extension of limbs and/ or clonus. Muscles are tight at rest, and a spastic movement may be set off with a light touch. Deep tendon reflexes are hyperactive. The presence of non-volitional movement does not predict motor recovery.
Spasticity often worsens with infections or other irritation such as a distended bowel or bladder, in-grown toenails, or anything that would typically cause pain.
Spasticity should be treated if it interferes with function, contributes to contracture risk, or causes pain. Performing range of motion exercises is the first line treatment for spasticity and is recommended at a frequency of 2- 4 times per day across all spastic joints.
The most frequently used oral medications for spasticity are baclofen (Lioresal) and tizanidine (Zanaflex). Botulinumtoxin and phenol injections are often used to target specific areas of the body. Intrathecal baclofen pumps can be helpful for those whose spasticity cannot be managed well with oral medication.
Tips: Muscle spasms, such as those experienced by people with a back strain, are not the same as spasticity. Muscle relaxers such as cyclobenzaprine (Flexeril) are not useful to treat spasticity in individuals with SCI.
Physiatrists (physical medicine and rehabilitation physicians) and neurologists are trained in spasticity management.
Pain
Pain is a frequent problem for people living with SCI. Pain can be from multiple causes, chronic and have intermittent acute flare ups.
Musculoskeletal pain occurs frequently because of overuse injuries, typically in the wrists and shoulders. This occurs in people who transfer themselves and push their own wheelchairs. Carpal tunnel syndrome and shoulder tendinopathy or bursitis are common. Contractures from muscle imbalance and inadequate range of motion can become painful.
For overuse injuries, repetitive upper body tasks should be minimized, and wheelchair biomechanics can be re-evaluated by a physical therapist. Power wheelchairs or power assist mode may be helpful. Injections, exercises, massage, or acupuncture may also help. Commonly used medications are NSAIDs and acetaminophen.
If spasticity is making pain worse, treatment with range of motion, splinting or medication can help. Medical cannabis may be effective for spasticity as well as pain. Cannabis may interact with certain drugs and is not legal federally. Other state or local laws on cannabis use should also be considered.
Neuropathic pain (typically burning or stabbing) can be perceived as originating in areas that are otherwise insensate. Neuropathic pain may be treated with a combination gabapentoids such as gabapentin (Neurontin), tricyclic antidepressants such as nortriptyline (Pamelor), and anti-epileptic medications such as carbamazepine (Tegretol). When allodynia (pain to light touch) is present, topical lidocaine may be helpful.
Visceral pain (cramping, dull ache) can also be experienced and can be caused by constipation, gallbladder inflammation, kidney stones, etc. The pain can be difficult to localize. If the source of the pain is below the level of injury where there is little or no feeling, the pain may present as a referred pain. Workup should proceed according to the clinician’s suspicion.
All types of pain may respond to relaxation techniques, yoga, acupuncture, biofeedback, and other psychologic interventions.
Tip: Physiatrists are trained in both spinal cord injury medicine and non-operative pain management. They can be extremely helpful in diagnosing and treating pain for individuals with spinal cord injury.
Routine Health Maintenance
Exercise and standing
People with SCI benefit from both aerobic and resistance exercise. The use of standing frames may provide benefits to spasticity, organ function and the individual’s sense of well-being.
Annual examinations
For people with spinal cord injury should include the typical cardiovascular, cancer screenings, gynecologic and psychosocial screenings. Additionally, consider sleep disorder, osteoporosis, and renal function screening. An annual review of skin integrity, bowel, and bladder program functionality, and autonomic dysreflexia occurrence may be helpful. Consider inquiring about dental health since access may be limited.
During an annual physical examination, inspection of the skin including the sacrum, buttocks, and heels is recommended. Examination for spasticity and contractures is also helpful.
Vaccinations
Pneumococcal, influenza, and COVID-19 vaccinations are recommended because of reduced pulmonary function.
Who Does What?
Physiatry, PT, OT
Physiatrists complete a medical residency program and become board certified physicians through the ABPM&R. They have comprehensive training in the needs of people with SCI. SCI fellowship provides more in-depth training. SCI fellowship trained physiatrists typically work in inpatient rehabilitation facilities and may offer outpatient appointments. Physical therapists (PTs) are trained in mobility and musculoskeletal disorders. They apply modalities and exercises to treat pain. Some have expertise in wheelchair design. Occupational therapists (OTs) work on activities of daily living, and some have additional expertise as hand therapists. Both OT and PT require a physician’s order to treat patients.
Resources for More information
American Spinal Injury Association Primary Care Providers – SCI Healthcare Resources
More information on injury by level can be found at the American Spinal Injury Association website:
Christopher & Dana Reeve Foundation fact sheets
Christopher & Dana Reeve Foundation Paralysis Resource Guide
Christopher & Dana Reeve Foundation patient education booklets
Christopher & Dana Reeve Foundation wallet cards on autonomic dysreflexia, deep venous thrombosis and sepsis
Please see their clinical guidelines here.
Reading List
Spinal Cord Injury: Top 10 Questions for the Newly Injured
Pressure Injuries and Skin Management
Paralyzed Veterans of America: Clinical Guideline on Respiratory Management
Reviewed by:
Cristina Sadowsky, MD
Clinical Director, International Center for Spinal Cord Injury
Kennedy Krieger Institute
Associate Professor, Physical Medicine and Rehabilitation
Johns Hopkins School of Medicine
Baltimore Maryland
The information contained in this article is presented for the purpose of informing you about paralysis and its effects. Nothing contained herein is to be construed or intended as a medical diagnosis or treatment. Contact your physician or other qualified healthcare provider should you have questions on your health, treatment, or diagnosis. Please see our medical disclaimer.
