Neuromuscular Scoliosis

What it is

Neuromuscular scoliosis is a curve of the spine that develops because the muscles that hold the trunk upright are weak, tight, or out of balance. It happens in children with cerebral palsy, spinal muscular atrophy, Duchenne and other muscular dystrophies, spina bifida, spinal cord injury, Rett syndrome, and several other conditions. The more a child depends on a wheelchair, the more likely a curve becomes. In children with cerebral palsy who cannot sit on their own, most will develop one.

These curves behave differently from teen scoliosis. They tend to be long and C-shaped, they often tilt the pelvis, and they can keep growing after the child stops growing. The goal of treatment is also different. It is not about appearance. It is about sitting comfortably and evenly, breathing well, protecting the skin, making daily care easier, and keeping your child comfortable and engaged in life.

How it shows up

You may notice your child leaning to one side in the chair, sliding or needing more supports, using an arm to prop up, or sitting unevenly on one hip. Caregivers often notice before any X-ray: transfers get harder, the chair no longer fits, feeding takes longer, or a red area appears on the skin over one hip. Some children have more trouble breathing or clearing their chest.

How we measure and follow it

A sitting X-ray of the whole spine measures the curve in degrees and shows how tilted the pelvis is. I usually recheck every 6 to 12 months, and more often during growth spurts, because these curves can move quickly in the preteen years. I also look at the hips, since a dislocated hip and a tilted pelvis feed each other, and at the lungs, nutrition, bones, and seizure or medicine issues that affect the plan. Your child's whole team matters here: neurology, pulmonology, cardiology, gastroenterology, physical therapy, and the seating clinic.

How we treat it

• Seating and positioning: a well-fitted wheelchair with trunk supports, a tilted or molded seat, and careful pressure relief does a lot for comfort and function. It does not stop the curve, but it is the foundation of care.
• Soft bracing: a soft or semi-rigid jacket can help a child sit upright and use their hands. It usually does not stop the curve from growing, so I use it as a tool for sitting, not as a cure.
• Treating the whole child: good nutrition, strong bones (vitamin D and calcium, and sometimes bone medicines), good lung care, reflux control, and managing spasticity all matter, before and after any surgery.
• Growth-friendly surgery: for a young child with a large curve, growing rods or magnetic rods can control the curve while the chest and spine keep growing.
• Spinal fusion: for larger curves that affect sitting, breathing, or comfort, a posterior spinal fusion straightens and levels the spine and pelvis with rods and screws. In most children with neuromuscular scoliosis the fusion extends to the pelvis to level it. This is a large operation, and it is one of the most rewarding ones I do: most families tell me their child sits better, is more comfortable, and is easier to care for.

What many families have not heard yet

• Preparation is the operation before the operation. Children with neuromuscular scoliosis face more risk from surgery than teens with ordinary scoliosis: longer surgery, more bleeding, and an infection rate that is several times higher. I use a structured checklist before every one of these operations. It covers nutrition (a blood protein called albumin tells us if your child is ready to heal), lung function, heart tests, bone density, skin checks, seizure control, bladder and bowel care, and a plan for every medicine and feeding tube. Most problems can be found and fixed before surgery day.
• New treatments are changing spinal muscular atrophy. Gene therapy and spinal injections for SMA have changed what the disease looks like. Children treated early are stronger and get scoliosis later, if at all. If your child receives nusinersen (Spinraza) by spinal injection, I plan the fusion so a small window is left for future injections. Tell me about every treatment your child receives before we plan anything.
• Steroids change the timeline in Duchenne. Boys who take steroids for Duchenne muscular dystrophy develop scoliosis later and less often, and fewer need fusion. Heart checks are a required part of planning any surgery in Duchenne.
• Hips and spine are one system. A tilted pelvis can push a hip out, and a dislocated hip can tilt the pelvis. I look at both and sometimes we plan the order of treatments together.
• Pain and comfort count as reasons to treat. A child who cannot tell us about pain can still show it: more crying, less sleep, less interest in eating or play. We take those changes seriously.
• The intensive care unit is normal, not a sign of trouble. After fusion, most children with neuromuscular scoliosis spend a night or more in the ICU, and some need the breathing machine for a short time while they wake up fully. We plan for it in advance so it is not a surprise.
• Baclofen pumps and shunts are part of the plan. If your child has an intrathecal baclofen pump or a shunt, I plan the surgery around the tubing and coordinate with the team that manages it.
• Expect a bowel slowdown after surgery. Pain medicine, anesthesia, and lying still slow the gut. A bowel plan starts on the first day. Rarely, after a big correction, a child can have a blockage where the intestine passes under a blood vessel. We know the signs and watch for them.
• Your view is the outcome. Questionnaires made for caregivers of children with severe cerebral palsy ask about comfort, positioning, daily care, and quality of life. Those answers, not the degrees on an X-ray, are how I judge success.

The science: for the curious

Weak or unbalanced trunk muscles let gravity pull a growing spine into a curve, and the curve then loads the growth plates unevenly, so the bones grow into the curve. That cycle is why these curves keep progressing even after growth ends. Fusion with modern screw fixation, often extending into the pelvis, stops the cycle and levels the sitting base. Published studies show meaningful improvements in sitting ability, comfort, and caregiver-reported quality of life after fusion in children with severe cerebral palsy, alongside a complication rate that is higher than in idiopathic scoliosis. Careful preparation, antibiotic choices matched to the child's risks, blood-saving medicines, and skin and nutrition care during the hospital stay are the measures proven to lower that risk.

Learn more

Pediatric Orthopaedic Society of North America, Neuromuscular Scoliosis: orthokids.org (opens in a new tab)

Scoliosis Research Society, Scoliosis (including neuromuscular): srs.org (opens in a new tab)

More for families

OrthoKids · POSNA

POSNA's OrthoKids: illustrated, family-friendly information on this condition.

Open on OrthoKids (opens in a new tab)

Scan for the OrthoKids page

This handout is general education and does not replace the personalized advice we discuss in clinic about your child's specific case. If anything here does not match what we talked about, what we talked about wins: please ask me.