Pediatric Neuromuscular Scoliosis

Disease/Disorder

Definition

Neuromuscular scoliosis (NMS) refers to a three-dimensional deformity of the spinal column that has a frontal/coronal plane curve greater than 10 degrees (Cobb angle >10 degrees) and is secondary to a neurological or muscular pathology.¹

Etiology

Idiopathic scoliosis is scoliosis of unknown etiology and is the most common form of scoliosis.² In children with neurological or muscular conditions, NMS occurs much more frequently than idiopathic scoliosis. Etiologies can include central motor neuron involvement, peripheral motor neuron involvement, mixed motor neuron involvement, neuromuscular junction abnormality, or muscular causes (Table 1)

Table 1: Common Etiologies of Neuromuscular Scoliosis²

Table from source 5 (Vialle et al 2013)

Epidemiology including risk factors and primary prevention

The incidence of NMS among disorders that affect the central or peripheral motor nerves, neuromuscular junction, or muscles is between 25-100%, depending on the exact etiology (Table 2). In comparison, idiopathic scoliosis occurs in 2-4% of the general population. The incidence of NMS increases with severity of involvement and is inversely related to ambulation.

Table 2: Occurrence of Neuromuscular Scoliosis by Disease Process^2,3,4,5

Table from source 5 (Vialle et al 2013)

Risk factors include any source of spinal imbalance. These may include spasticity, hypotonia, spinal asymmetry due to congenital bony malformation or asymmetrical growth (bony bridge, hemi-vertebrae), asymmetric strength or muscle tone, altered sensory feedback, or pelvic obliquity.

Patho-anatomy/physiology

NMS results from an imbalance in control of trunk musculature around the spinal axis. NMS is likely to progressively worsen due to the ineffective muscular compensations that initially led to the NMS. The classic radiographic finding in NMS is a long thoracolumbar curve with pelvic obliquity. Kyphotic deformity with trunk collapse is also commonly seen.⁵

Disease progression including natural history, disease phases or stages, disease trajectory (clinical features and presentation over time)

NMS can present in all ages of children (typically before age 10 years) and trajectory is dependent on the disease process. In SMA and congenital myopathies, NMS can present at an early age and requires management beginning at initial detection. Conversely, in patients with DMD, NMS tends to be mild while a patient is ambulating but progresses once walking is lost. NMS is often progressive and can advance very rapidly. NMS can also continue to progress after skeletal maturity. Curve progression is seen in all curves once they reach 40 degrees. Treatment of the primary disease when available is important in preventing the progression of NMS.⁵

Specific secondary or associated conditions and complications

As NMS progresses and the angle of curvature becomes larger, general health and wellbeing decline. Progressive NMS affects ambulation, sitting balance, upper extremity positioning and function, and transfers. Comorbidities include pain, pressure sore formation, and alteration of ventilation mechanics and cardiopulmonary function. Progressive neurologic deterioration may occur due to spinal cord or peripheral nerve compression because of the deformity.^4,5

Essentials of Assessment

History

History should include all events leading up to the current presentation, including diagnosis and work-up related to the underlying cause of NMS. It also requires a birth history, perinatal history, developmental milestones, family history, and inquiry regarding associated conditions such as renal or cardiac anomalies. It is important to review the growth rate, age at NMS diagnosis, progression rate of the curve, and detailed ambulation status, including both current and previous.

A careful assessment of symptoms such as worsening fatigue, headache, concentration difficulties, school performance difficulties, snoring/gasping witnessed apnea spells, chest pain or discomfort may be helpful to assess worsening cardiopulmonary status. Assessing for sitting balance

Physical examination

Neurologic exam should include assessment of muscle tone, reflexes, balance, gait, walking capacity, motor strength, and sensory exam (especially in spinal cord injury patients).

Musculoskeletal exam should include joint range of motion (paying careful attention to the hip and pelvic positioning), shoulder symmetry and scapular position, pelvic tilt and obliquity, chest cage deviation, trunk balance, joint stiffness, joint deformity, limb length, and sitting balance (on an exam table and in their mobility device if applicable).

Respiratory exam should include assessment of work of breathing, rib excursion and symmetry, and use of any assistive devices.

Cardiac exam should include rate and rhythm, pulses, evidence of edema.

Skin exam should include assessment for breakdown, pressure sores, or skin irritation.

Clinical functional assessment: Mobility, self-care cognition/behavior/affective state

Functional status can be reported using Functional Independence Measures (FIM) and WeeFIM measures to report on self-care, mobility, and cognition. Activities of daily living (ADLs) are also used to assess function and independence. NMS does not affect cognition, however the underlying disease process may. Neuropsychological testing can provide further assessment of cognitive function if needed.

Laboratory studies

Laboratory studies are not required for NMS; however, they may be completed based on underlying condition.

In patients preparing for surgery, be sure to monitor nutritional status.⁵

Imaging

The degree of scoliosis is measured using the Cobb angle. To measure the Cobb angle, lines are drawn (dashed line) along the superior endplate of the uppermost vertebrae involved to the inferior end plate of the lowest vertebrae involved. If the endplates cannot be reliably visualized, the borders of the pedicles are used instead (Figure 1).

Interactive software can be used to calculate the Cobb angle.⁶

Figure 1

As there are less clear guidelines for neuromuscular scoliosis, some guidance can be found from the literature on adolescent idiopathic scoliosis, though there are certainly significant differences in this population. In general, standing PA and lateral x-rays of the spine are the imaging of choice, but supine or sitting PA and lateral views can be obtained if patient is unable to stand.⁷ Supine and lateral bending views may be used.

A recent study considered ultra-low dose CT in neuromuscular scoliosis and found that it was overall well tolerated in a series of 14 patients. Only one needed sedation, and they reported that radiation doses were comparable to standard x-rays. CT is useful to better characterize any bony abnormalities which may contribute to the scoliosis.⁸

Spinal MRI may be used to detect abnormalities such as a spinal syrinx, tethered cord syndrome and Chiari malformations, which are important to identify if present prior to operating, particularly in patients with early onset scoliosis who may not have a clear diagnosis. There continues to be variability and a lack of consensus in screening protocols for this, however.⁹

Renal ultrasound can be considered to assess bladder and kidneys if underlying condition is associated with abnormalities. Cardiac imaging can be considered to assess current cardiac function.

Overall, optimal imaging screening guidelines for neuromuscular scoliosis remain controversial and an area of ongoing debate.

New technologies are being developed to provide more standardized electronic methods of measuring scoliotic curves, but these are not yet widely available.^1,9

Supplemental assessment tools

Respiratory: pulmonary function tests (PFTs), use of any assistive devices (cough assist, intermittent positive pressure breathing devices (CPAP or BiPAP), non-invasive ventilation assists, or tracheostomy and ventilator use). The American College of Chest Physicians recommends testing at least every 6 months in NMS patients.

There is no recommendation for frequency or timing of polysomnography, overnight oximetry, or home sleep testing however full polysomnography is recommended at least once in pediatric populations with excessive sleepiness, history of snoring or apneic episodes.¹⁰

Cardiac: determined by underlying diagnosis, however it is reasonable to assess cardiac status every 1-2 years or sooner if surgical intervention is indicated. A electrocardiogram and/or echo can monitor the progression of cardiomyopathy, arrhythmia, or conduction.¹¹

Additional assessments: nutritional assessment, swallowing assessment, and assessment for any chronic infections, for example chronic urinary tract infection.

Early prediction of outcomes

Risk factors associated with progression of scoliosis include increased pelvic obliquity, severe motor dysfunction (GMFCS IV-V), vertebral rotation, and female gender. Those with severe restrictive lung disease as shown on PFTs or earlier onset scoliosis have been associated with increased risk of postoperative hospital stays ≥7 days and overall poorer outcomes after surgical intervention.¹²

Environmental

Regular access to a multidisciplinary care clinic with early detection of scoliotic curve progression can improve surveillance and therefore prevent larger curves at presentation and worse surgical outcomes. Ensure that patients have appropriate nutritional support, pulmonary support devices, equipment, and school-based accommodations. Social support system can impact scoliosis outcomes indirectly and can impact compliance with treatment regimens due to various factors.

Professional issues

As NMS progresses, it often is accompanied by a loss of independence through worsening sitting balance, decreased upper extremity usage, mobility device use including power wheelchairs, difficulty with self-care tasks including bathing and dressing – all of which increase caregiver demands. This can affect self-esteem, emotional health, and body image. It is important to refer to psychology and/or social work as needed for additional support.

Educating parents/caregivers on recommended screening protocols and awareness of worsening symptoms can assist providers in making timely recommendations or interventions. This can improve adherence to interventions such as bracing or positioning, which can be uncomfortable and require extended wear times.

Rehabilitation Management and Treatments

Available or current treatment guidelines

The Scoliosis Research Society (SRS) was started in 1966 with the goal to optimize care for all patients with spinal deformities. This organization highlights diagnosis, management, and treatment (both surgical and non-surgical of various scoliosis etiologies including idiopathic, early onset, syndromic, congenital, neuromuscular, and others. The International Scientific Society on Scoliosis Orthopedic and Rehabilitation Treatment (SOSORT) developed guidelines for idiopathic scoliosis that were renewed in 2011. However, there are no current guidelines for neuromuscular scoliosis. Although there is not currently one specific treatment guideline, the SRS and SOSORT recommendations are used in treatment planning worldwide.¹³

The timing of bracing in neuromuscular scoliosis remains controversial. There are some that argue as scoliosis curves in neuromuscular disease progress even after the growth period has ended, bracing is not worth the risks of discomfort and skin breakdown associated with it. Some support bracing up to 18 hours per day, while others support bracing for a few hours per day depending on patient tolerance and comfort. In addition, there is debate on the types of braces that are best for neuromuscular scoliosis. A recent 2026 review looked at evidence for bracing in idiopathic scoliosis, but the evidence for neuromuscular scoliosis remains limited.²³

On review of available evidence, the authors noted the following

• The rigid thoracolumbosacral orthosis is the most common brace used.
• The flexible thoracolumbosacral brace is an additional option. This brace is thought to have several advantages including decreased risk of skin issues, less time in the brace (7.3 ± 5.5 hours) and increased patient comfort.¹⁴
• Garchois-type corset: is an additional type of rigid brace that can be considered. This brace is classically used in Spinal Muscular Atrophy Type II patients. A benefit of this brace is full chest expansion.¹⁵
• Underarm bi-valve or a full contact soft plastazote brace is thought to improve posture and anecdotally thought to help delay curve progression in less severely affected patients.¹⁶

Bracing Considerations

• Size of curve (usually bracing occurs between Cobb Angle 25-40 degrees).
• Curve type: is the curve flexible or rigid? Some studies report C shaped curves have a more favorable response to bracing.
• Hamstring and Hip involvement: NMS is a complex phenomenon that involves multiple joints. Some patients may have increased hamstring or hip involvement that further affects sitting balance.
• Pelvic involvement. Patients with pelvic obliquity may have decreased benefits of lumbar bracing.
• Sensation: patients with intact skin sensation may have decreased tolerance to bracing.
• Skin health: bracing increases risk of pressure ulcers and other skin irritation issues.
• Respiratory compromise: Patients require monitoring of respiratory status, especially those in rigid braces which limit chest expansion.¹⁴
• Some attention has been given to serial casting, with a small study of 44 patients in 2020 finding that in patients with neuromuscular scoliosis, serial casting/bracing seemed to delay scoliosis surgery by several years in some patients.²⁴

Regardless of the type of brace used and the duration of bracing, the goal of bracing is to: potentially delay timing of surgical stabilization, increase sitting stability, improve overall position, and improve respiratory expansion, and improve overall function.¹⁴

Therapy

Therapy is not often listed in the management of NMS as therapy does not delay curve progression. However, physical and occupational therapy remain beneficial in the management of conditions associated with NMS, and there is evidence to support benefits, especially in adolescent idiopathic scoliosis. Therapy aids in maintaining range of motion, tone, and strength; strengthening core muscles may help address symptoms associated with scoliosis, such as pain.

Surgical Intervention

Caregivers may consider surgical correction of spinal deformity in patients with:

• Quality of life is affected
• Increased back or pelvic pain
• Cardiorespiratory compromise
• Issues with self-care including bowel and bladder management
• Issues with weight
• Issues with sitting balance

Goals for surgical management of NMS are to decrease pain, improve pulmonary and cardiac function, and improve ADLs, seat positioning, and self-perception. It is important to note that in NMS surgery can be considered between Cobb Angle 20-40 degrees, especially if the curve is rapidly progressing. However, most NMS correction occurs between 40-90. After 90 degrees surgery has even more intraoperative risk. These patients undergo surgery on a case-by-case basis. Additionally, before surgery caregivers need to undergo extensive education on the risks of the procedure, chance of surgery extending to the pelvis, and change in patient transfers.

Surgery begins with selection of the most ideal surgical candidates. However, many patients with neuromuscular scoliosis have a myriad of health issues. These health issues lead to increased peri, intra, and post-operative risk partially attributed to overall health status, respiratory insufficiency, cardiovascular comorbidities, and nutritional deficiencies.¹⁶

Peri-Operative Care: As these patients have increased risk of multi-morbidity, clearance for surgery requires shared decision making between caregivers and the medical team and an evaluation by a team of providers.

• General medical clearance for surgery requires collaboration with the patient’s primary care doctor and may also require clearance from subspecialists.
• Cardiac clearance: evaluation by cardiologist, may include cardiac work up including EKG, transthoracic echocardiography, or cardiac MRI.
• Complete blood count: to obtain baseline hemoglobin and hematocrit levels and lymphocyte count.
• Gastroenterologist: Patients especially those with decreased BMI, may benefit from GI evaluation before surgery to discuss optimal nutrition methods pre and post-surgery.
• Nutrition levels: including albumin and pre-albumin.
• Vitamin levels: obtaining a vitamin D level can be beneficial and reflect overall bone health.¹⁷
• Respiratory evaluation: Patients need their lung volumes measured; however, some patients may not be able to complete pulmonary function test. Patients with day or nighttime hypoventilation, vital capacity less than 60 percent of predicted, and ineffective cough have increased rates of prolonged postoperative ventilation. These patients may benefit from preoperative training of airway clearance techniques or the initiation of noninvasive ventilation.

Intra-Operative Care

These patients require close neurological, cardiac and pulmonary monitoring during surgical intervention. Close monitoring of these systems has led to decreased intra-operative complications.

The major types of surgery are as follows

Spinal Fusion

• Spinal fusion remains the gold standard surgical technique to correct scoliosis in NMS and several long-term studies have supported its use. Spinal fusion typically occurs after skeletal maturity to minimize the impact on the final size of the ribcage as spinal growth is usually inhibited following a fusion. Instrumentation during spinal fusion often extends to the pelvis to correct any pelvic obliquity present. Extension of instrumentation to the pelvis with iliac screws has been shown to improve function when compared to fusions that did not extend to the pelvis.
• A spinal fusion can be performed by a combined anterior and posterior approach, or posterior only approach depending on the severity and flexibility of the curve. The combined approach has an increased complication rate. Instrumentation can affect patient function and cause spinal stiffness, increase the difficulty of self-catheterization and some hand to mouth activities, and limit bending/reaching.

Non Fusion Techniques

• The techniques below are non-fusion techniques that permit growth.
  • Growing Rods: Growing rods are a surgical alternative to bracing in young children and can be placed in children as young as 8 months. The goal of growing rods is to obtain a strong fixation on either side of the curve and, as the child grows, to repeatedly lengthen the rods. This allows the child’s thoracic volume and lung volume to continue to expand with age until the patient is old enough for spinal fusion with the smallest residual curve and with the least amount of pulmonary compromise. Some of these systems require repeated surgeries to lengthen the rods, while others use non-invasive technology with magnetics for growth. Mechanical complications are common. These children remain at risk for all other complications from surgery, including surgical site infections. Following growing rods, fusion is eventually required and provides a more stable life-long correction.
  • Minimally Invasive Surgery: The minimally invasive surgical approach was developed as an alternative to the growing rods procedure. It involves the instrumentation anchored by hook claws distally to the pelvis by iliosacral screws. Studies have noted that fibrosis and spontaneous fusion often occurs around the implants and rods after the initial procedure leading to spine stability. This procedure has been associated with lower complication rates and does not require spinal fusion. Research comparing this technique to others is ongoing. Early studies show post-surgical improvements in sitting balance and Cobb angle and pelvic obliquity correction comparable to other techniques, with the benefit of fewer medical complications.¹⁸

Post-Operative Care

A 2025 study determined that patients with impaired lung function who use non-invasive ventilation at baseline, those with a tracheostomy, overweight, full time wheelchair dependence, or have prior history of hip surgery have increased rated of immediate, postoperative complications. A different study showed that after NMS correction, patients have a 1% in-hospital mortality. Additionally, these patients have a risk of neurological injury such as spinal cord injury, between 0.003% to 1.03%.^16,19,20

In addition to the above risk factors, after surgery there is an increased risk of complications in multiple body systems

• Pulmonary: Post-operative pneumonia, aspiration, atelectasis. Less frequently, pneumothorax, hemothorax, and chylothorax, respiratory failure, deep vein thrombosis, pulmonary embolism.
• Hematologic: Post-operative anemia, hematoma, Complications of intraoperative bleeding. NMS patients have 7 times higher risk of extensive blood loss partially due to operative time. Additional factors include reduced coagulation factor reserve and increased fibrinolytic activity. DMD patients are at an even higher risk due to lack of dystrophin in the cardiovascular system.
• Gastrointestinal: paralytic ileus/postoperative dysmotility, gastroparesis, dysphagia. Less commonly Pancreatitis and superior mesenteric artery syndromes.
• Cardiac: arrhythmias,
• Skin: Surgical and other wound infections.
• Musculoskeletal: Fracture, Pseudarthrosis, Implant failure, post operative pain
• Prominent instrumentation leading to skin irritation or skin breakdown
• Medical complications such as sepsis, or issues related to underlying condition.
• Neurological: Dural tear
• Renal: acute kidney injury, renal failure
• Genitourinary: increased risk of urinary tract infections; incidence is as high as 20% to 22%. Due to neurogenic bladder, these patients also have increased risk of pyelonephritis. Less common: hematuria and chronic retention.²¹

Determining when it is appropriate to proceed with surgery remains difficult. Ideally, surgery is planned when it will not compromise lung volume or thoracic cavity size in a child who has not reached skeletal maturity. Other risks of surgery as mentioned above must also be considered.

Coordination of care

Diseases associated with NMS have multiorgan involvement. Therefore, a care team that includes the following specialists may be needed

• Physiatrists (especially those with an emphasis on pediatric rehabilitation)
• Pediatricians
• Neurologists
• Genetics
• Cardiologists
• Pulmonologists
• Gastroenterologists
• Orthopedic Spine Surgeons and Neurosurgeons specializing in pediatric spinal deformity correction
• Therapists (physical, occupational, speech)
• Dieticians
• Mental health providers

Patient & family education

Patients with NMS, have a variety of functional levels. It is important to note that some patients require an overall increased baseline of care. Continuous care can lead to increased rates of caregiver burnout. It is vitally important that parents are counseled on the risks of caregiver burnout, educated on mitigation strategies, and provided resources to navigate this complex dilemma.

Other topics of family and patient education

• Natural history of NMS including potential genetic syndromes.
• Progression of the scoliotic curves with an emphasis on curvature change during, before and after puberty.
• Conservative management including bracing, wheelchair and seating modifications.
• Surgical management including risks and benefits of surgery and multi-staged treatment approaches.
• Post-operative changes in position, flexibility, and function.
• In depth discussion on potential surgical complications including decrease in previous level of function, risks of decreased mobility, risk of spinal cord injury (rare incidence, less than 1%).

Measurement of treatment outcomes including those that are impairment-based, activity participation-based and environmentally-based.

Treatment outcomes in post-operative management of neuromuscular scoliosis have been repeatedly studied. These studies show that post surgery there are improvements in: sitting balance, transfers, decrease in Cobb angle, improvement in thoracic kyphosis, improvement in lumbar lordosis, weight gain and overall caregiver satisfaction.

One 2022 study measured caregiver satisfaction with two surveys given between 1.4-5.9 years post scoliosis correction. This study concluded that over time, caregiver satisfaction with transfers initially increased but then declined at the second survey. Caregivers remained satisfied with: sitting balance, quality of life, digestion and defecation management. There was no statical change in: sleep, perianal care, social interaction, dressing, respiratory, and social domains. ²²

Translation into practice: Practice “pearls”/performance improvement in practice (PIPs)/changes in clinical practice behaviors and skills

Management of NMS requires a continued multidisciplinary approach to maximize patient outcomes. These patients require regular appointments to monitor tone especially in the hamstrings and hips, skin, curve progression, and Cobb angles, and pelvic obliquity. Additionally, these patients require continued education regarding the progressive nature of NMS and its complications, especially as they transition into adulthood.

Cutting Edge/Emerging and Unique Concepts and Practice

Historically, outcome measures post NMS correction have not included a patient centered approach. There are several emerging health related quality of life assessments that have been developed for cerebral palsy (one of the most common diagnoses of NMS).²²

Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) is a validated assessment tool. This tool has several limitations including amount of questions, duration of questionnaire-more than 30 minutes, and discrepancy of motor function that can affect caregiver completion of the questionnaire.

Assessments that focus on patient experience will continue to be an area of growth.

Growth Preservation Surgery and minimally invasive surgeries are growing fields of surgical innovation.

Use of technology to improve scans and 3D- digital modeling of scoliosis curves in an area that continues to grow and will likely be more readily available in the years to come.

Understanding of the complexity of NMS and its biomechanic complications is a field that continues to evolve, and in the future there will likely be new surgical techniques and treatment options.

Gaps in the Evidence-Based Knowledge

Further research is needed to continue to monitor the quality of life of patients and caregivers after undergoing NMS deformity correction surgery. Additionally, the type of bracing to use for patients remains a debated topic. Surgical interventions are continuing to evolve, especially those using robotics, growth preservation, minimally invasive, and magnetic controlled growth rods. More data is needed to compare definitive spinal fusion with the before mentioned surgical techniques. Additionally, gene therapy remains a growing field with potential implications in these specific patient populations. Multi-disciplinary approach to these patients remains necessary for optimal patient outcomes.

References

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21. Sedra F, Shafafy R, Sadek AR, Aftab S, Montgomery A, Nadarajah R. Perioperative Optimization of Patients With Neuromuscular Disorders Undergoing Scoliosis Corrective Surgery: A Multidisciplinary Team Approach. Global Spine J. 2021 Mar;11(2):240-248. doi: 10.1177/2192568220901692. Epub 2020 Feb 13. PMID: 32875888; PMCID: PMC7882827.
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24. LaValva, Scott BA et al; Pediatric Spine Study Group Serial Casting in Neuromuscular and Syndromic Early-onset Scoliosis (EOS) Can Delay Surgery Over 2 Years, Journal of Pediatric Orthopaedics: September 2020 – Volume 40 – Issue 8 – p e772-e779.

Original Version of the Topic

Andrea Paulson, MD. Neurogenic Scoliosis. 9/7/2018

Previous Revision(s) of the Topic

Monis Syed, MD, Sarah Macabales, DO, Larissa Pavone, MD. Pediatric Neuromuscular Scoliosis. 7/26/2023

Author Disclosure

Aimee Lambeth, DO
Nothing to Disclose

Kamaria Coleman, MD, MBS
Nothing to Disclose

Emory Reyes, DO
Nothing to Disclose