Driving riders with a spinal cord injury: autonomic dysreflexia, pressure relief, and power chairs

The injury level tells you what to plan for

A spinal cord injury interrupts the signals between the brain and the body below the damage. NINDS explains that higher injuries affect more of the body: an injury in the neck can affect all four limbs (tetraplegia), while a lower one may affect only the legs and lower body (paraplegia). An incomplete injury leaves some feeling and movement below it. A complete injury leaves none.

The level also decides what happens to functions nobody thinks about. Blood pressure, heart rate, body temperature, and sweating are run by the autonomic nervous system, and many of its signals travel through the cord. Injuries at the sixth thoracic level (T6) and above are the ones tied to autonomic dysreflexia, unstable body temperature, and blood pressure that drops when the person sits up. NINDS adds that injuries between C1 and C4 can stop breathing, so the riders with the highest injuries may travel with a ventilator and need their own plan.

The National Spinal Cord Injury Statistical Center estimates about 311,560 people in the U.S. live with a traumatic spinal cord injury, with about 18,482 new cases a year. Since 2015 the average age at injury has been 44.3, and incomplete tetraplegia is the most common category. About 29% are hospitalized again in any given year, most often for genitourinary problems and then skin problems. Bladder and skin are exactly what a ride can aggravate.

Three facts help dispatch plan the trip. The first is whether the injury is at T6 or above. The second is whether the rider has had autonomic dysreflexia before and carries a wallet card or medication for it. The third is the chair: manual, power, or tilt, plus who rides along to help.

Autonomic dysreflexia: the emergency to learn first

Autonomic dysreflexia is a potentially life-threatening rise in blood pressure. The Model Systems Knowledge Translation Center describes it as the body’s reaction to pain or discomfort below the level of injury, even when the person cannot feel the cause. People injured at T6 or above are at risk, and the factsheet says most of them experience it. The Reeve Foundation notes reports from people injured as low as T10.

The numbers explain why it is easy to miss. Some people with these injuries have a usual top number of only 90 to 110. Dysreflexia means the top number climbs 20 to 40 points above that usual reading, so a reading that looks normal for most adults can be a crisis for this rider. Left alone, it can lead to a bleeding stroke, heart attack, kidney failure, seizures, or death.

The signs the rider may report or show:

• A pounding headache, the symptom most people know.
• Flushed or red skin and sweating above the injury.
• Goose bumps, a stuffy nose, or blurred vision.
• A slow pulse, chills without fever, or restlessness.
• Cold, clammy skin below the injury.

The Reeve Foundation warns that mild symptoms are often ignored and that some episodes produce high blood pressure with no symptoms at all.

What sets it off in a vehicle

Anything that would hurt below the injury can trigger it. The bladder is the number one cause: a full bladder, or a kinked or blocked catheter. The Reeve Foundation adds leg bag straps that are too tight and a heavy or overfull leg bag. The bowel comes second and skin third, including pressure injuries, cuts, tight or lumpy clothing, jeans rivets, badly fitting shoes, and belts. Warm or cold surroundings and muscle spasms can trigger it too.

In a van, that list turns into specific things to check: a lap belt or tie-down strap pulled across the leg bag or its tubing, a bag that has filled on a long ride, a footplate or strap pressing on a foot, and a cabin that is too hot or too cold.

When it starts: the driver’s steps

The rider usually knows what is happening before the driver does. Listen to them and follow their lead.

1. Pull over somewhere safe and tell dispatch. Nothing below happens while the van is moving.
2. Keep the rider sitting upright. The Consortium for Spinal Cord Medicine’s guideline says to sit the person up immediately and lower the legs if possible, so blood can pool in the legs. NINDS gives the same advice: staying seated keeps blood flowing to the legs and feet, which helps bring the pressure down. If the chair is tilted or reclined, bring it upright.
3. Loosen anything tight. Waistbands, belts, shoes, and straps. With the van parked, a lap belt pressing on the abdomen can be loosened and refastened before moving again.
4. Check the catheter tubing. Look for a kink or a strap pinching it, and look at the leg bag. Emptying the bag or catheterizing is for the rider or their caregiver.
5. Ask about their card and medication. The Model Systems factsheet tells people at risk to carry a wallet card for medical staff. Some carry prescribed medication that they or their caregiver use.
6. Call 911 if it does not ease. The factsheet says to call 911 when the cause cannot be found or the blood pressure cannot be controlled. Tell the call-taker “spinal cord injury, possible autonomic dysreflexia,” hand over the card, and keep the rider upright until help arrives.

Write it up the same day. Our guide to a medical emergency during a ride covers the handoff to EMS and who needs to hear about it.

The opposite problem: blood pressure that drops

The same injuries can also make blood pressure fall. The Consortium’s guideline defines orthostatic hypotension as a drop of 20 points or more in the top number when moving from lying down to upright, and says it may affect people injured at T6 and above whether or not they feel it. When symptoms do appear, they include tiredness or weakness, light-headedness, dizziness, blurred vision, shortness of breath, and restlessness.

This is the risk when a stretcher rider is sat up or a reclined rider is brought upright quickly. The guideline lists a reclined position and a slow move from lying to sitting among the ways to manage it. The two conditions call for opposite responses, and the guideline notes that a blood pressure reading is what tells them apart because the symptoms can look alike. That is one more reason to let the rider or caregiver lead and to call 911 when nobody is sure.

Holding the cabin temperature

People injured above T6 often cannot keep their core temperature steady by sweating to cool off or shivering to warm up. The Consortium’s guideline says cold is the more common problem: these riders can drift into hypothermia in a cold setting, sometimes without obvious symptoms, and can turn drowsy, confused, or irritable. For overheating, it recommends a cooler, preferably air-conditioned space, cool drinks, and rest.

What that means for the van:

• Warm or cool the cabin before the pickup. Do not make the rider wait in a hot or cold vehicle while the lift is set up.
• Keep heat away from skin the rider cannot feel. The guideline urges extreme caution with heating devices on numb areas. The Model Systems factsheet on preventing pressure sores names car heaters and hot food on the lap as burn risks.
• Bring a blanket in winter and water in summer. The rider’s own layers matter more than the thermostat.

Pressure relief on rides longer than half an hour

Riders who cannot feel their seat bones do not get the warning that tells everyone else to shift. The Model Systems factsheet on preventing pressure sores says wheelchair users should relieve pressure every 15 to 30 minutes for at least 30 to 90 seconds, and to keep doing it in a car. Methods include leaning to one side, leaning forward with the chest toward the knees, and push-ups for people with enough arm strength. Riders who cannot do any of these use a power tilt.

Tilt is the catch on the road. The pressure relief factsheet says a tilt of 25 to 65 degrees relieves pressure and 15 degrees or less does not. The University of Michigan’s Ride Safe guidance says it is best to travel with the backrest 30 degrees or less from vertical so the shoulder belt stays on the shoulder and chest. A full relief tilt therefore happens with the van parked. On a long trip, ask the rider how they manage pressure relief while belted in, plan stops for riders who need a full tilt, and return the chair upright before moving.

Keep the rider on their own cushion, and lift rather than drag during any transfer. Our guide to skin tears and pressure injuries covers cushions, transfers, and what to do when skin is damaged on a ride.

Tilt chairs, heavy power bases, and spasms at the tie-downs

The Model Systems power wheelchair factsheet says people who cannot shift their own weight or transfer should have a chair with both tilt and recline, so expect them on high-injury trips. It also describes rear-wheel, front-wheel, and mid-wheel drive bases that handle differently in tight spaces. Ask the rider to drive onto the lift or tell you how the chair behaves.

A tilt seat changes where the straps go. On a non-WC19 tilt chair, Ride Safe puts all four tie-downs on the seat frame or all four on the base frame, because mixing them can let the straps go slack if the seat angle changes in a crash. The chair’s postural belts hold the rider in position but are not built for crash forces, so the vehicle’s lap and shoulder belt still go on. The securement standards guide covers strap placement, and the power chair guide covers weighing a heavy chair and rider against the lift rating. Riders with cerebral palsy also use tilt and custom seating; see transporting cerebral palsy riders.

Spasms are likely during securement. The Model Systems spasticity factsheet says 65% to 93% of people with a spinal cord injury have spasticity, more often after neck injuries and incomplete injuries. Touch, stretching, how the person sits in the chair, skin irritation, a full bladder, tight clothing or wraps, and extreme temperatures can all set it off. Tell the rider before touching their legs, keep your hands clear while a spasm runs its course, and finish afterward. The same factsheet warns that strong spasms can throw a person out of a wheelchair over uneven surfaces, and notes that a change in spasms can point to a problem the rider has not noticed, such as a bladder infection or pressure injury.

Things a driver does not do

• Lay the rider flat for a headache or flushing. Sitting up is the first response to dysreflexia.
• Run a strap or belt across the leg bag or its tubing. Bladder problems, including a pinched catheter, are the most common trigger.
• Put heat on numb skin. No heat packs, hot drinks on the lap, or heater vents aimed at the legs.
• Count a postural belt as a seat belt. It is not built for a crash.
• Tilt the chair far back while the van is moving. Pressure relief tilts happen parked.
• Dismiss a complaint because it sounds minor. The Reeve Foundation warns that ignoring even a mild symptom can be life threatening.

Keeping dispatch close with HealthRide

If a driver has to pull over for a rider in trouble, dispatch can see the van on the live map and reach the driver through team chat. Wheelchair, stretcher, and oxygen needs are matched to the vehicle when the trip is planned. Riders and families can follow the driver live from a text link, so a caregiver knows when to have the rider ready.