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Neuromuscular Scoliosis

  • If your child has been diagnosed with neuromuscular scoliosis, we know that you and your family are under stress, and are already dealing with the underlying neuromuscular condition that’s associated with his scoliosis. So, at Children’s Hospital Boston, we’ll approach your child’s treatment with sensitivity and support—for your child and your whole family. And it will be our constant goal to maximize your child’s function, strength and quality of life.

    You can have peace of mind knowing that the team in the Boston Children’s Spinal Program has treated many children with spinal problems—some of which are so rare that few pediatric doctors have ever come across them—and we can offer you expert diagnosis, treatment and care.

    About scoliosis

    Scoliosis is a condition in which the spine—in addition to the normal front to back curvature—has an abnormal side-to-side “S-” or “C”-shaped curvature. The spine is also rotated or twisted, pulling the ribs along with it to form a multidimensional curve.

    Scoliosis occurs, and is treated, as three main types:

    • neuromuscular scoliosis: associated with a neuromuscular condition such as cerebral palsy, myopathy or spina bifida
    • congenital scoliosis: present at birth, caused by a failure of the vertebrae to form normally—the least common form
    • idiopathic scoliosis: occurring with no definite cause

    About neuromuscular scoliosis

    Neuromuscular scoliosis is the form that’s associated with your child’s underlying nerve and/or muscular condition, which may be:

    These types of neuromuscular conditions cause muscles to become weak, spastic or paralyzed—and unable to support the spine, resulting in spinal curvatures.

    The Boston Children’s Hospital  approach

    Boston Children’s Spinal Program is known for clinical innovation, research and leadership. We’ll provide your child with the most advanced diagnostics and treatments—several of which were developed by our own researchers and clinicians.

    As one of the first comprehensive programs, Boston Children’s Orthopedic Center is the largest and most experienced pediatric orthopedic surgery center in the United States, performing more than 6,000 surgical procedures each year. Our program—top ranked in the country by U.S.News & World Report—is the nation’s preeminent care center for children and young adults with neuromuscular, developmental, congenital and post-traumatic problems of the musculoskeletal system.

    Some of our team’s unique accomplishments include our:

    • development of the Boston Brace, a custom bracing sys tem widely used throughout the United States and Europe
    • unique experience in the treatment of adolescent hip conditions
    • success with the VEPTR(vertical expandable prosthetic titanium rib) procedure: In 1998, Children’s was selected as a site for the first extensive VEPTR use outside San Antonio, where it was developed. Children’s has the second most extensive VEPTR experience in the nation.
    • experience with, and emphasis on, treating infantile (early-onset) scoliosis
    • experience with, and research in, brachial plexus birth palsy, including our international, multi-center study of this complex condition
    • Sports Medicine Program, including its pioneering research into the regeneration of ACL tissue and growth plate-sparing surgeries for ACL repair in pre-adolescents
    • extensive orthopedic research laboratories
    • Orthopedic Clinical Effectiveness Research Center for the study of children’s musculoskeletal disorders

    Each year, our Spinal Program caregivers provide comprehensive evaluation, diagnosis, consultation, treatment and follow-up care for children during more than 6,000 outpatient visits. And every year, our orthopedic surgeons perform more than 300 spine procedures.

    We Offer Orthopedic Care in Lots of Places

    Children’s provides orthopedic care—including for scoliosis and other spine problems—at Boston Children’s satellite locations in Lexington, Peabody and Waltham, as well as at our main campus in Boston.

    If You Come From Far Away, We Can Help

    As an international pediatric orthopedics center, Boston Children’s treats young patients from all over the world. Our International Center assists families residing outside the United States: we facilitate the medical review of patient records; coordinate appointment scheduling; and help families with customs and immigration, transportation, hotel and housing accommodations.

    Neuromuscular scoliosis: Reviewed by John Emans, MD
    © Boston Children's Hospital, 2010

    Orthopedic Center
    Boston Children's Hospital

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    Lexington MA 02420
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    Boston Children's Physicians South
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  • At Boston Children’s Hospital Boston, our Spinal Program team develops innovative treatments for scoliosis and other spine defects. We’re home to the world’s most extensive pediatric hospital research enterprise, and we partner with elite health care and biotech organizations around the globe. But as specialists in innovative, family-centered care, our physicians never forget that your child is precious, and not just a patient.

    In dealing with your child’s neuromuscular scoliosis, you may want to know the basics about the spine and about the several forms of this spinal condition.

    What is the spine?

    Made up of many individual bones called vertebrae, the normal spine is joined together by muscles and ligaments. Flat, soft discs separate and cushion each vertebra from the next. Because the vertebrae are separate, the spine is flexible and can bend. Together the vertebrae, discs, muscles and ligaments make up the spine or vertebral column.

    Various regions of the spine are named differently: The cervical spine refers to the neck, the thoracic spine to the chest, and the lumbar and sacral spines to the lower back.

    What is scoliosis?

    Although the spine has natural curves from front to back, it shouldn’t curve sideways very much. A side-to-side curve is called scoliosis, and may take the shape of an abnormal “S” (double curve) or a long “C” (single curve). The scoliotic spine is also rotated or twisted, pulling the ribs along with it to form a multi-dimensional curve. In serious cases, lung and heart function can be affected, as well as other organ systems.

    What are the three main types of scoliosis?

    Scoliosis occurs, and is treated, as three main types:

    • neuromuscular scoliosis: the second-most common form of scoliosis, associated with disorders of the nerve or muscular systems like cerebral palsy, spina bifida, muscular dystrophy or spinal cord injury.
       
    • congenital scoliosis: Congenital scoliosis results from a fetus’ abnormal spinal development in utero, such as a partial or missing formation or a lack of separation of the vertebrae.
       
    • idiopathic scoliosis: the most common form of scoliosis, most commonly seen in adolescent and pre-adolescent girls. “Idiopathic” simply means that there is no definite cause. Most cases require no intervention.

    What are some of the defining characteristics of neuromuscular scoliosis?

    Some characteristics of neuromuscular scoliosis include:

    • occurs in children with underlying neuromuscular disease
    • usually a “C”-type curve
    • onset much younger than many other forms of scoliosis
    • more common and severe in non-ambulatory patients (those whose neuromuscular disease prevents them from walking)
    • curve virtually always progressive; progression can continue into adulthood
    • progresses (worsens) more during growth spurts
    • progressing (worsening) curve can lead to collapsed torso and raised diaphragm, reducing lung space, impeding lung function and increasing risk of pneumonia; more severe effect if lung function is already compromised by weak muscles that control breathing (as in muscular dystrophy and high-level spinal cord paralysis)
    • many organ systems involved due to underlying nerve or muscular disease, which can cause:
      • contractures of hips and knees
      • vision and hearing loss
      • lung function impairment
      • seizures
    • bracing useful for functional support but rarely stops the curve
    • commonly requires spinal fusion surgery in non-ambulatory, severe patients by adolescence, usually sooner than with idiopathic scoliosis
      • fused portion of the spine is longer than with idiopathic scoliosis—often extends to sacrum and pelvis
      • may require both anterior and posterior surgeries
        • some posterior elements may be missing from spine (as in spina bifida)
        • helps achieve a spine with torso in balance over pelvis (usually in non-ambulatory patients)
    • spine surgery’s goals are to:
      • stabilize the curve and stop its progression
      • balance the spine and pelvis (usually in non-ambulatory patients)
      • regain the ability to sit upright (in children who have lost this ability)
      • improve/preserve lung function

    What are the signs and symptoms of neuromuscular scoliosis?

    You, your child’s doctor or his caregiver will most likely notice his spinal curve because of a deteriorating ability to sit or a change in his body’s overall position:

    • he may begin leaning toward one side of his seat in an uneven seating posture
    • he may increasingly need to use his arms for seating support

    You may notice that his:

    • shoulders are of uneven heights
    • head isn’t centered with the rest of his body
    • hips are of uneven heights or positions, or uneven buttocks
    • shoulder blades are of uneven heights or positions
    • arms hang beside his body unevenly
    • left and right sides of his back appear different in height when he bends forward

    How do you diagnose neuromuscular scoliosis?

    Doctors will use medical and family histories, physical exams and diagnostic tests to determine the nature, extent and effects of your child’s scoliosis and underlying neuromuscular disease. Your Children’s multi-disciplinary care team will evaluate his nutritional status, lung and heart function, functional level, joints and extremities (for contractures), balance and ambulatory (walking) level. Testing can include:

    How do you treat neuromuscular scoliosis?

    Most neuromuscular conditions are diagnosed early in a child’s life, and neuromuscular scoliosis may also manifest early. When it appears, your child’s team will use non-surgical treatments such as bracing, wheelchair modification, physical therapy and environmental adaptation to help your child adapt to his everyday environments, and to help improve his mobility.

    While most non-ambulatory pre-adolescent children are usually treated with bracing to control (not correct) spinal curves while they grow, stabilization by spinal fusion surgery is the most common treatment for neuromuscular scoliosis by the time a child reaches adolescence. But treatment will vary according to the type and severity of a child’s neuromuscular condition.

    What if the curve is severe in my very young child before he’s ready for spinal fusion?

    A young child with a severe early-onset curve can be treated with growth-friendly (growth preserving) procedures such as growing rods and/or VEPTR. The metal rods inserted in these procedures can help control the curve until he’s ready for spinal fusion. The rods are made longer as the child’s spine grows.

    What are the benefits of spinal fusion surgery?

    A spinal fusion aims to:

    • stabilize the curve and stop its progression
    • balance the spine and pelvis (usually in non-ambulatory patients)
    • regain the ability to sit upright (in children who have lost this ability)
    • improve/preserve lung function

    If my child needs surgery, what will happen beforehand?

    Before surgery, your child’s surgical team will assess his:

    • lung and heart function
    • nutritional and protein status
    • likelihood of post-operative feeding difficulties
    • neurologic status and seizure medications
    • urologic status
    • bone health
    • swallowing and regurgitation evaluation (for cerebral palsy patients)
    • clotting and bleeding evaluation (for children subject to seizures, since some seizure medications can affect blood clotting)

    Will there be complications after the surgery?

    Because neuromuscular scoliosis is associated with other underlying neuromuscular conditions, the complication rate after surgery is higher than with some other types of scoliosis. Complications are common, anticipated and treatable. They can include:

    • respiratory problems: Post-operative pneumonia is a risk for a child with a poor cough reflex or some paralysis of the chest (intercostal) muscles.
    • wound problems: Skin breakdown and infection can occur.
    • nutritional/feeding problems: A feeding tube may be necessary until the child can feed orally again.
    • hip problems: Many children who have spinal fusion also have stiff or abnormal hips. Fusing the spine may make existing hip contractures more troublesome.
    • intestinal obstruction (ileus): This can result from intestinal sluggishness (hypomotility).

    Who will be on my child’s scoliosis treatment team at Boston Children’s?

    Your child’s scoliosis team at Boston Children’s may include his doctor, an orthotist (a specialist who makes braces), a physical therapist and a nurse, who will guide you through the treatment process. Specialists, such as neurologists and physiatrists as well as social workers, speech/language specialists and others—will be part of the team as needed to address your child’s underlying neuromuscular condition.

    As part of our family-centered approach, your child’s nurse will help with all your questions and appointments. The nurse can also:

    • help you understand how best to care for your child, his brace, wheelchair, orthotics or other equipment
    • design a schedule for you and him to follow
    • help you meet others whose children have neuromuscular disease with scoliosis—in person and/or online

    Will my child be OK?

    The outlook for your child mostly depends on the nature, severity and effects of his neuromuscular disease, and less on his scoliosis.

    With successful surgery and attentive post-operative care, your child can:

    • return to the functional level he had attained before surgery
    • have his spine solidly fused and in balance, reducing the deformity
    • have the potential for improved lung function and decreased susceptibility to pneumonia
    • find it easier to sit up; requirements for seating adaptation will usually be improved

    Boston Children’s Hospital’s research into spinal problems—including neuromuscular scoliosis—means that we will provide your child with the most innovative care available.

    FAQ

    Q: What is scoliosis?

    A:
    Scoliosis is a condition in which the spine, in addition to the normal front to back curvatures, has an abnormal side-to-side “S-” or “C”-shaped curvature. The spine is also rotated or twisted, pulling the ribs along with it. Sometimes, a child’s lung function can be compromised when the curvature is severe or starts early in life.

    Q: What is neuromuscular scoliosis?

    A:
    Neuromuscular scoliosis is the form that's associated with another, underlying condition involving the nerves and/or muscles, such as cerebral palsy, spina bifida, myopathy, muscular dystrophy and paralysis from spinal cord injury.

    Q: If my child has neuromuscular scoliosis, will he be OK?

    A:
    The outlook for your child greatly depends on the nature, severity and effects of his scoliosis and his underlying neuromuscular disease. With successful surgery and attentive post-operative care, your child can return to the functional level he had attained before surgery. His spine will be solidly fused and in balance—usually reducing the deformity and improving his breathing.

    Q: How does Children’s treat neuromuscular scoliosis?

    A:
    Most neuromuscular conditions are diagnosed early in a child’s life, and neuromuscular scoliosis may also present early. When it appears, your child’s team will use non-surgical treatments such as bracing, wheelchair modification, physical therapy and environmental adaptation to help your child adapt to his everyday environments, and to help improve his mobility.

    While most non-ambulatory pre-adolescent children are usually treated with bracing to control (not correct) spinal curves while they grow, stabilization by spinal fusion surgery is the most common treatment for neuromuscular scoliosis by the time a child reaches adolescence. But treatment will vary according to the type and severity of a child’s neuromuscular condition.

    Q: What are the signs and symptoms of neuromuscular scoliosis?

    A:
    You, your child’s doctor or his caregiver will most likely notice his spinal curve because of a deteriorating ability to sit or a change in his body’s overall positioning.

    Q: How is scoliosis usually diagnosed?

    A:
    Doctors will use medical and family histories, physical exams and diagnostic tests to determine the nature and extent of your child’s scoliosis and underlying neuromuscular disease. Your Children’s multi-disciplinary care team will evaluate his nutritional status, lung and heart function, functional level, joints and extremities (for contractures), balance and ambulatory (walking) level. Testing can include:

    Q: What should I expect after my child has spinal fusion surgery for neuromuscular scoliosis?

    A:
    After surgery, most patients go to the ICU (intensive care unit), where some may be put on a ventilator, and some may require a longer stay than others. Your child’s hospital stay will probably be between five and 10 days.

    During your child’s hospital recuperation, his Children’s caregivers will closely monitor his lungs, fluids and nutrition. They will get him up and moving as soon as possible, and will extend his time upright a little more each day. His wheelchair will be modified for his improved sitting position.

    Q: What's the long-term outlook for my child with neuromuscular scoliosis?

    A
    : With successful surgery and attentive post-operative care, your child can:

    • return to the functional level he had attained before surgery
    • have his spine solidly fused and in balance, reducing the deformity
    • have the potential for improved lung function and decreased susceptibility to pneumonia
    • find it easier to sit up; requirements for seating adaptation will usually be minimized

    His longer-term outlook greatly depends on the extent and severity of—and the prognosis for—his underlying neuromuscular condition.

    Q: Will a straighter spine after surgery improve the function of my child’s organ systems?

    A:
    A straighter spine can improve your child’s lung function and decrease his vulnerability to pneumonia. It can reduce deformity and help him with his sitting posture. And sometimes, a straighter spine will improve the organ function of a child with neuromuscular disease—but not always. (Rarely, a straighter spine can actually be detrimental to function.) However, not correcting his curve surgically will almost always result in breathing or positioning problems later on.

    Q: What is Children’s experience treating neuromuscular scoliosis?

    A:
    At Boston Children’s Spinal Program, we’re known for our clinical innovations, research and leadership. We offer the most advanced diagnostics and treatments—several of which were pioneered and developed by Children’s researchers and clinicians.

    Q: What are Children’s spine research and innovations?

    A:
    Boston Children’s Orthopedic Clinical Effectiveness Research Center (CERC) helps coordinate research and clinical trials to improve the quality of life for children with musculoskeletal disorders, such as scoliosis. CERC physicians are pursuing several areas of basic and clinical research based at Children’s and the Harvard Orthopaedics Biomechanics Laboratory.

    Causes

    Neuromuscular scoliosis is associated with an underlying neuromuscular condition such as cerebral palsy, muscular dystrophy, spina bifida, myopathy or paralysis from spinal cord injury.

    Signs and symptoms

    You, your child’s doctor or his caregiver will most likely notice his spinal curve because of a deteriorating ability to sit or a change in his body’s overall position:

    • he may begin leaning toward one side of his seat in an uneven seating posture
    • he may increasingly need to use his arms for seating support

    You may notice that his:

    • shoulders are of uneven heights
    • head isn’t centered with the rest of his body
    • hips are of uneven heights or positions, or uneven buttocks
    • shoulder blades are of uneven heights or positions
    • arms hang beside his body unevenly
    • left and right sides of his back appear different in height when he bends forward

    When to seek medical advice

    Because your child has an underlying neuromuscular disease, your doctor and caregivers will be evaluating him frequently. His scoliosis will usually become apparent as the result of changes in his sitting ability and/or body position. Consult your child’s doctor if you notice that he is:

    • leaning toward one side of his seat in an uneven seating posture
    • increasingly needing to use his arms for seating support

    Also consult the doctor is you notice that his:

    • shoulders are of uneven heights
    • head isn’t centered with the rest of his body
    • hips are of uneven heights or positions
    • shoulder blades are of uneven heights or positions
    • arms hang beside his body unevenly
    • left and right sides of his back appear different in height when he bends forward

    Questions to ask your doctor

    If your child is diagnosed with neuromuscular scoliosis, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you. Lots of parents find it helpful to jot down questions as they arise—that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.

    Some of the questions you may want to ask include:

    • What is happening to my child, and why?
    • Are other tests needed to diagnose my child?
    • What actions might you take after you reach a diagnosis?
    • What will happen with growth over time?
    • Will there be restrictions on my child’s activities?
    • Will there be long-term effects?
    • What can we do at home?

    Who’s at risk

    Children most at risk for developing neuromuscular scoliosis include:

    • non-ambulatory children with quadriplegic cerebral palsy
    • children who have spina bifida with a high level of paralysis
    • children with spinal cord paralysis before age 10 years                                                           

    Complications

    Because neuromuscular scoliosis is associated with other underlying neuromuscular conditions, the complication rate after surgery is higher than with some other types of scoliosis. The complications are common, anticipated and treatable. They can include:

    • respiratory problems
    • wound problems
    • nutritional/feeding problems
    • hip problems
    • intestinal obstruction (ileus)

    Long-term outlook

    With successful surgery and attentive post-operative care, your child can:

    • return to the functional level he had attained before surgery
    • have his spine solidly fused and in balance, reducing the deformity
    • have the potential for improved lung function and decreased susceptibility to pneumonia
    • find it easier to sit up; requirements for seating adaptation will usually be minimized

    His long-term outlook greatly depends on the extent and severity of—and the prognosis for—his underlying neuromuscular condition.

    For teens

    Besides the typical issues any teenager faces—from social acceptance to body changes and more—if you have a neuromuscular disease that includes scoliosis, it’s true that you’ll also have to deal with medical appointments, feeling different and assuming a big personal responsibility for maintaining your health. You may also wonder why you need surgery.

    It’s important for you to know that surgery for your scoliosis will fuse your spine to correct the curve and prevent further curvatures. You’ll be able to sit more upright in your wheelchair. You’ll also probably breathe better and be less susceptible to respiratory problems.

    Even knowing the benefits of surgery and treatments, this can be a tough time for you. If you feel overwhelmed, depressed or anxious during this important time in your transition to adulthood, speak to your doctor or counselor to get help.

    What to expect after your child’s surgery

    After surgery, most patients go to the ICU (intensive care unit), where some may be put on a ventilator, and some may require a longer stay than others. Your child’s hospital stay will probably be between five and 10 days. Your child’s caregivers will closely monitor his lungs, fluids and nutrition. They'll get him up and moving as soon as possible, and will extend his time upright a little more each day. His wheelchair will be modified for his improved sitting position.

    Prevention

    Neuromuscular scoliosis is associated with your child’s underlying neuromuscular disease. Nothing you or your child did caused it, and there’s nothing you could have done to prevent it.

    Neuromuscular scoliosis glossary

    • Adams forward bending test: a screening measure for assessing scoliosis
    • ambulatory: pertaining to walking, able to walk
    • anterior fusion: spinal fusion surgery on the front of the spine approached from the side of the body; sometimes combined with posterior fusion, usually performed on the same day or in stages
    • brace, bracing (spinal orthosis): A brace supports your child’s spine in a balanced position over the pelvis. A bracing program may help delay surgery.
    • The Center for Families at Children’s: dedicated to helping families find the information, services and resources they need to understand their child’s medical condition and take part in their care
    • Cobb angle: an angular measurement on x-ray to evaluate the severity and degree of scoliosis curves
    • congenital scoliosis: a form of scoliosis resulting from abnormal in utero spinal development, such as a partial or missing formation or a lack of separation of the vertebrae
    • contractures, joint contractures: joints with limited range of motion and that cannot be fully straightened or bent; frequent among patients who don’t walk; can be a complication in hips after surgery
    • diagnosis: identifying disease or injury through examination, testing and observation
    • ICU: intensive care unit
    • idiopathic scoliosis: the most common form of scoliosis, mainly affecting adolescent girls. “Idiopathic” simply means that there is no definite cause. Nothing you or your child did caused the defect, and there’s nothing you could have done to prevent it.
    • instrumentation: the metal rods, hooks, screws and wires implanted during spinal fusion surgery to correct the spinal curve and secure the spine in position while the fusion heals and becomes solid
    • neuromuscular: affecting, or characteristic of, both neural (nerve) and muscular tissue
    • neuromuscular scoliosis: scoliosis that is associated with disorders of the nerve or muscular systems like cerebral palsy, spina bifida, muscular dystrophy or spinal cord injury
    • orthopedics: the medical specialty concerned with diagnosing, treating, rehabilitating and preventing disorders and injuries to the spine, skeletal system and associated muscles, joints and ligaments
    • orthopedist, orthopedic surgeon: a physician specializing in surgical and non-surgical treatment of the spine, skeletal system and associated muscles, joins and ligaments
    • orthotics: the science of designing and fitting of devices such as braces to treat orthopedic conditions
    • physical therapy:a rehabilitative health specialty that uses therapeutic exercises and equipment to help patients improve or regain muscle strength, mobility and other physical capabilities
    • posterior fusion: spinal fusion surgery approached from the back of the body; sometimes combined with anterior fusion, performed either simultaneously or in two stages
    • progression, curve progression: worsening of a scoliosis curve
    • scoliometer: a surface measurement device for evaluating the angle of torso rotation (ATR or scoliometer angle, which is not the ‘Cobb’ angle measured on x-ray)
    • scoliosis: a spinal condition in which the spine, in addition to the normal front to back curvature, has an abnormal side-to-side “S-” or “C”-shaped curvature. The spine is also rotated or twisted, pulling the ribs along with it. Scoliosis occurs in three main types: neuromuscular (associated with neuromuscular diseases); congenital (present at birth); and idiopathic (no definite cause).
    • seat supports, seating supports: supports for helping to sit upright (usually in a wheelchair) for children with insufficient balance for self-support. Seating supports help children sit upright, but they don’t correct curves.
    • spinal cord: a nerve bundle within the vertebral column that extends down from the brain stem; it conducts signals in both directions between the brain and extremities, and  allows for bodily motion and sensation
    • spinal fusion: usually a solid fusion (solidification) of the curved part of the spine, achieved by operating on the spine, adding bone chips and allowing the vertebral bones and bone chips to slowly heal together to form a solid mass of bone called a fusion. A fusion partially corrects a scoliosis curve, stabilizes the curve and stops its progression, as well as balancing the spine and pelvis (usually in non-ambulatory patients).
    • spine (spinal column, vertebral column): the series of moving vertebrae forming the axis of the skeleton and protecting the spinal cord
    • VEPTR™ (titanium rib) procedure: an operation that expands the chest and allows continued growth of the chest and spine. A curved metal rod fits the back of the chest and spine, helping the spine to become straighter and allowing the lungs to grow and fill with enough air to breathe. The device can be made longer as your child grows.
    • vertebra, vertebrae: the individual spine bones that form the spinal column
  • At Boston Children's Hospital, we know that the first step in treating your child is forming an accurate and complete diagnosis.

    Doctors will use medical and family histories, physical exams and diagnostic tests to determine the nature, extent and effects of your child’s scoliosis and underlying neuromuscular disease. Your Children’s multi-disciplinary care team will evaluate his:

    • nutritional status
    • lung and heart function
    • functional level
    • joints and extremities (for contractures)
    • balance and ambulatory (walking) level

    X-rays and other tests

    X-rays (front and side) are the main diagnostic tools for confirming the presence of scoliosis, as well as the severity of the curve. To evaluate the underlying condition associated with the scoliosis, additional tests can include:

    Doctors can often predict the likely progression of your child’s curves by assessing the magnitude of his existing curve(s), as well as his physiologic and skeletal growth levels.

  • Boston Children's Hospital's Spinal Program provides comprehensive care—including evaluation, diagnosis, consultation, non-surgical therapies, surgery and follow-up care. How we treat your child's scoliosis will depend on several factors, including:

    • the nature and severity of his curves
    • his age at onset and his current age
    • the rapidity of curve progression
    • his underlying neuromuscular disease
    • his general health including lung, heart and urologic function
    • your family's wishes

    Non-surgical treatments

    Most neuromuscular conditions are diagnosed early in a child's life, and neuromuscular scoliosis may also present early. When scoliosis appears, your pre-adolescent child's team will use non-surgical treatments such as bracing, wheelchair modification, physical therapy and environmental adaptation to help your child adapt to his everyday environments, and to help improve his mobility:

    • bracing: A brace supports your child's spine in a balanced position over the pelvis. A bracing program may help with seating and function, and may delay surgery.
    • physical therapy: Our physical therapy team's goal is to maximize your child's physical functioning. Our physical therapists work closely with the Spinal Program to also provide exercise programs and additional therapies to address pain and the muscular imbalance that can be associated with spinal abnormalities.

    Spinal fusion surgery

    While most non-ambulatory pre-adolescent children are usually treated with bracing to control (not correct) spinal curves while they grow, stabilization by spinal fusion surgery is the most common treatment for neuromuscular scoliosis by the time a child reaches adolescence. But treatment will vary according to the type and severity of a child's neuromuscular condition.

    The goals of a spinal fusion are to:

    • stabilize the curve and stop its progression
    • balance the spine and pelvis (usually in non-ambulatory patients)
    • regain the ability to sit upright (in children who have lost this ability)
    • improve/preserve lung function

    Spinal fusion for neuromuscular scoliosis usually has these characteristics:

    • It's needed by the time a child reaches adolescence (usually sooner than with idiopathic scoliosis).
    • The fused portion of the spine is longer than with idiopathic scoliosis.
    • Surgeons use metal rods, hooks, screws and wires during surgery to correct the spinal curve and secure the spine in position while the fusion heals and becomes solid.
    • Combined anterior/posterior surgery is a common approach because:
      • Some posterior elements may be missing from spine (as in spina bifida).
      • This approach helps achieve a spine with pelvis in balance (usually in non-ambulatory patients).

    Surgical Innovation

    MAGEC (MAGnetic Expansion Control) System: Boston Children’s spinal team is an early adopter of this adjustable growing rod system that uses magnetic technology and a remote control to non-invasively lengthen the device. When used in appropriate patients, the device offers the potential to reduce the number of surgical procedures children with idiopathic, neuromuscular or congenital spinal deformity must undergo when treated with growth-friendly surgical techniques. MAGEC replaces the periodic lengthening surgeries with a non-invasive alternative, reduces exposure to anesthesia and is expected to be more cost-effective than repetitive lengthening surgeries.

    Treating severe curves in very young children

    A young child with a severe early-onset curve can be treated with growth-friendly (growth preserving) surgical procedures such as growing rods and/or VEPTR. The metal rods inserted during these procedures can help control the curve until he's ready for spinal fusion. The rods are made longer as the child's spine grows.

    Before surgery

    In preparation for your child's surgery, his Children's surgical team will assess his:

    • lung and heart function
    • nutritional and protein status
    • likelihood of post-operative feeding difficulties
    • neurologic status and seizure medications
    • urologic status
    • bone health
    • swallowing and regurgitation evaluation (for cerebral palsy patients)
    • clotting and bleeding evaluation (for children subject to seizures, since some seizure medications can affect blood clotting)

    Complications after surgery

    Because neuromuscular scoliosis is associated with other underlying neuromuscular conditions, the complication rate after surgery is high. Complications are common, anticipated and treatable. They can include:

    • respiratory problems: Post-operative pneumonia is a risk for a child with a poor cough reflex or some paralysis of the chest (intercostal) muscles.
    • wound problems: Skin breakdown and infection can occur.
    • nutritional/feeding problems: A feeding tube may be necessary until the child can feed orally again.
    • hip problems: Many children who have spinal fusion also have stiff or abnormal hips. Fusing the spine may make existing hip contractures more troublesome.
    • intestinal obstruction(ileus): This can result from intestinal sluggishness (hypomotility).

    Caring for your child after surgery

    After surgery, most neuromuscular scoliosis patients go to the ICU (intensive care unit), where some may be put on a ventilator, and some may require a longer stay than others. Your child's hospital stay will probably be between five and 10 days.

    During your child's hospital recuperation, his Children's caregivers will closely monitor his lungs, fluids and nutrition. They'll get him up and moving as soon as possible, and will extend his time upright a little more each day. His wheelchair will be modified for his improved sitting position.                                            

    With successful surgery and attentive post-operative care, your child can:

    • return to the functional level he had attained before surgery
    • have his spine solidly fused and in balance, reducing the deformity
    • have the potential for improved lung function and decreased susceptibility to pneumonia
    • find it easier to sit up; requirements for seating adaptation will usually be minimized

    His long-term outlook greatly depends on the extent and severity of—and the prognosis for—his underlying neuromuscular condition.

    Coping and support

    At Children's, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit The Center for Families for all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    In particular, we understand that you may have a lot of questions when your child is diagnosed with scoliosis as part of his neuromuscular disease. How will this affect my child long term? What do we do next? Children's can help you connect with extensive resources to help you and your family through this stressful time, including:

    • patient education: From doctor's appointments to physical therapy and recovery, our nurses and physical therapists will be on hand to walk you through your child's treatment and help answer any questions you may have—Why will my child need surgery? How long will his recovery take? How should we manage home exercises and therapy? We'll help you coordinate and continue the care and support you received while at Children's.
       
    • parent-to-parent: Want to talk with someone whose child has been treated for neuromuscular scoliosis? We can often put you in touch with other families who've been through the same process that you and your child are facing, and who will share their experiences.
       
    • faith-based support: If you are in need of spiritual support, we'll connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy—representing Protestant, Jewish, Muslim, Catholic and other faith traditions—who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
       
    • social work: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial issues.

    A long line of orthopedic firsts

    With a long history of excellence and innovation and a team of clinicians and researchers at the forefront of orthopedic research and care, Boston Children's is home to many treatment breakthroughs:

    • advanced techniques and microsurgery care for complex fractures and soft tissue injuries to the hand and upper extremity
    • advances in our spinal program, such as video-assisted thorascopic surgery
    • the oldest and largest comprehensive center for the care of spina bifida
    • a hip program that has performed over 1,200 periacetabular osteotomies
    • one of the first scoliosis clinics in the nation
    • one of the first and sports medicine clinics in the nation
    • one of the first centers in the nation to use adjuvant chemotherapy and perform limb salvage surgery for patients with osteosarcoma

    Integrative therapies

    Our patient-centered approach means that we want your child to not only get better, but also feel good along the way. Throughout the hospital, you'll find clinicians trained in therapies that can make your child feel more comfortable, learn to shift focus away from pain and enjoy some peaceful moments during what may be an anxious time. Read more about how integrative therapies like acupuncture, guided meditation, guided imagery, massage, Reiki and therapeutic touch could help your child.

  • For more than a century, orthopedic surgeons and investigators at Boston Children's Hospital have played a vital role in the field of musculoskeletal research, pioneering treatment approaches and major advances in the care and treatment of ailments such as scoliosis, polio, tuberculosis, hip dysplasias and traumas to the hand and upper extremities.

    Our pioneering research helps answer the most pressing questions in pediatric orthopedics today—providing children with the most innovative care available.

    At Boston Children's Orthopedic Center, we take great pride in our basic science and clinical research leaders, who are recognized throughout the world for their respective achievements. Our orthopedic research team includes:

    • five full-time basic scientists
    • 26 clinical investigators
    • a team of research coordinators and statisticians

    Clinical Effectiveness Research Center

    The Orthopedic Clinical Effectiveness Research Center (CERC) helps coordinate research and clinical trials to improve the quality of life for children with musculoskeletal disorders. This collaborative clinical research program is unique in the nation and plays an instrumental role in establishing—for the first time—evidence-based standards of care for pediatric orthopedic patients throughout the world.

    Major areas of focus for the CERC include:

    Spinal program

    Physicians in the CERC Spinal Program are active in several areas of ongoing basic and clinical research based at Boston Children’s and the Harvard Orthopaedics Biomechanics Laboratory. Research topics include:

    • congenital scoliosis and idiopathic scoliosis
    • spondylolisthesis and spondylolysis
    • bone density studies of braced patients
    • in vitro mechanical testing of lumbosacral fixation devices
    • computer-assisted strength analysis of vertebral metastases

    Ongoing studies

    Ongoing clinical studies include:

    Spine Studies Partially Sponsored by the Spinal Deformity Study Group: The mission and purpose of the Spinal Deformity Study Group (SDSG) is to create a means and forum whereby multi-center studies can be developed and conducted both efficiently and effectively. The SDSG is comprised of fifty national and international spine surgeons from 35 participating sites world-wide. Drs. Emans and Hresko are members of the SDSG.

    • (SDSG) Prospective Pediatric and Adolescent Scoliosis Study
      This is a prospective multi-centered study focused on the outcomes of pediatric and adolescent idiopathic scoliosis. The main purpose of this observational study is to develop a prospective comprehensive radiographic and clinical database on consecutively treated pediatric and adolescent scoliosis surgical cases to assess outcome measures in patients with operative idiopathic scoliosis being treated with current surgical techniques.

      A secondary objective is to obtain data on currently available surgical approaches to treat idiopathic scoliosis in the thoracic, thoracolumbar, and lumbar spine.
       
    • (SDSG) Prospective Pediatric and Adolescent Kyphosis Study
      The main objective of this prospective multi-center, observational study is to assess outcome measures in pediatric and adolescent patients with kyphosis, who are being treated non-operatively or operatively with current surgical techniques. Secondarily, data on currently available surgical approaches to treat pediatric kyphosis in the thoracic and/or thoracolumbar spine will be collected.
    • (SDSG) Prospective Study of Deformity Management and Pulmonary Function in Early-Onset Scoliosis
      The goal of this prospective multi-center study of children with “idiopathic” scoliosis is to document concomitantly: 1) control of spinal deformity, 2) growth of the thoracic spine longitudinally and transversely at a rate commensurate with the number of vertebrae involved and (3) increasing lung volume, absolute and relative to body size.
    • (SDSG) The Effect of Surgery on Sagittal Spino-pelvic Measures of Balance in Developmental Spondylolisthesis and Its Relation to Clinical Outcome.
      The short-term goal of this prospective multi-center, observational study is to confirm the predictive value of sagittal spino-pelvic measurements in the surgical treatment of L5-S1 developmental spondylolisthesis. The long-term objective is to determine the optimal surgical treatment for L5-S1 developmental spondylolisthesis based on x-ray evaluation of sagittal torso balance and functional outcome.

    Other Multicenter Studies of Importance: By combining efforts with other centers, the Division of Spine Surgery at Children’s in Boston is able to more quickly reach valid research conclusions applicable to clinical practice.

    • Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST)
      BrAIST is a multicenter randomized trial funded by the National Institutes of Health. Children’s Hospital Boston is one of 18 pediatric centers in North America participating in this clinical trial. The overall goal of this research is to determine whether bracing can slow or halt curve progression in patients with Adolescent Idiopathic Scoliosis (AIS), alleviating the need for surgical correction.

      The secondary aims of this study are to 1) investigate the effect of the diagnosis and treatment of AIS on the overall physical and mental well-being of subjects over time, 2) determine the relationship between bracing dose (wear time) and curve progression and 3) develop a predictive model for curve progression based on patient characteristics at their initial presentation and after bracing or watchful waiting.
       
    • Dual Growing Rod Instrumentation with Limited Fusion for the Treatment of Early Onset Scoliosis
      This multi-center project is sponsored by the Growing Spine Study Group (GSSG). Initially a retrospective study, it has become a prospective observational study with 14 clinical centers from around the world contributing data. The main goal is to determine how successful dual growing rods and Vertical Expandable Prosthetic Titanium Rib (VEPTR™) devices are in correcting progressive scoliosis in very young children.

      Secondarily, researchers want to know if children who undergo successful surgical intervention with these devices, to control their curve during growth, need to go on to receive a definitive final fusion, or if the hardware can be removed and the curve simply observed over time for possible progression.

      Recently, the study was modified to include a non-operative cohort of patients who are treated for early onset scoliosis with non-surgical methods, such as bracing and casting. Outcomes associated with operative and non-operative treatment will be compared in hopes that the most effective methods of correction can be identified.
       
    • Skeletal Complications in Neurofibromatosis Type 1 (NF1)
      This study is being conducted by researchers at Boston Children's Hospital and Beth Israel Deaconess Medical Center. The goal is to identify cell types associated with and responsible for skeletal defects and impaired bone healing associated with NF1.

      A large proportion of patients with NF1 display skeletal abnormalities such as alterations in bone size and shape, the presence of scoliosis, and a tendency to develop pseudoarthrosis. Tissue samples from patients with and without NF1 will be analyzed by microscopic examination. We hope the results will lead to a better understanding of the cells predominantly responsible for skeletal defects in NF1 and lead to new strategies for treating this patient population.

    Ongoing laboratory studies include:

    • Basic science studies
    • Biomechanical/instrumentation studies

    Orthopedic basic science laboratories

    Working in our labs are some of the leading musculoskeletal researchers in the nation. These labs include:

    • Orthopedic basic science research
    • Center for the study of genetic skeletal disorders
    • Sports Medicine research laboratory
    • Bone cell biology laboratory
    • Matthew Harris laboratory

    Children Speak: What's it like to be a medical research subject?

    View a video of a day in the life of Boston Children’s Clinical and Translational Study Unit, through the eyes of children who are “giving back” to science.

  • Scoliosis surgery: from tears to smiles
    Fifteen-year-old Taylor Gomes approached her pre-operative appointment for scoliosis surgery as many teens might—in tears. “She came out of the appointment smiling. Not many people have that effect on Taylor,” says her mother Holly Gomes of Danvers, Mass.

    Holly credits Taylor’s orthopedic surgeon Michael Glotzbecker, MD, of Boston Children’s Hospital’s Department of Orthopedic Surgery, with her daughter’s 180-degree shift in attitude.

    A local pediatrician diagnosed Taylor with scoliosis when she was 8 years old, and measured her curve annually with back x-rays during her well-child appointments.

    By the time Taylor turned 14, her curve had progressed, and her pediatrician knew it was time to refer to a specialist at Boston Children’s.

    Enter Glotzbecker, who reviewed the teen’s options with the family. Initially, they opted to try a brace to prevent the curve from progressing. However, Taylor isn’t your average scoliosis patient. In addition to her spinal curve, Taylor’s health is compromised by anxiety, which flares up when she feels confined.

    She was unable to comply with the brace; after the initial fitting, it sat in her closet.

    By February 2013, Taylor’s curve had progressed to 55 degrees, and x-rays indicated she was still growing, which meant it was likely that the curve would worsen as her height increased.

    “I was overwhelmed,” confesses Taylor, who now admits to major anxiety before surgery.

    Glotzbecker encouraged the teen to email him with any questions, and Taylor made wise use of the privilege, asking him questions like when she would be able to resume dance or other activities. “He always gave me a quick answer. It was very easy to talk to him about what made me nervous.”

    Taylor also turned to other online resources, using “youtube.com” to watch videos about scoliosis and connect with other teens with the condition, which helped her learn how to handle the situation.

    When the big day arrived, Taylor and her parents felt as ready as they could be. The six-hour surgery went according to plan. The entire scoliosis team helped Taylor manage her weeklong hospital stay with minimal anxiety. Her hospital nurses and physical therapists explained the details of her recovery step-by-step, so Taylor knew what to expect when it was time to sit up in a chair and take her first steps.

    Several days after her surgery, another meeting between Glotzbecker and Taylor ended with the teen in tears. “She started crying, much like she had when we started to talk about surgery,” recalls Glotzbecker. “I asked her what was the matter, and she said, ‘Nothing…I am just really happy’.”

    A few weeks after surgery, Taylor is confident and smiling. The teen grew two inches after the surgery to correct the curve and is thrilled to have passed her mother in height. She plans on following Glotzbecker’s orders and easing back into dance lessons three months after surgery and returning to a full program of ballet, tap and jazz six months after surgery.

    Testing their metal: Titanium rib procedure gives patients room to breathe

    When you meet 4-year-old Zoe Lambert, the first thing you notice is her left shoulder. It sits higher than the right one and makes it look as though she got halfway through a child's shrug of "I don't know" before giving up.

    If you knew the health problems she's had in her short life, however, and realized that a metal rib in her chest allows her to bend at the waist and wave at you through her legs with an upside-down smile, her raised left shoulder would take on greater significance. Instead of an indifferent "I don't know," you might actually see the result of her severe birth defects as expressing a defiant, "What else have you got?"

    Zoe's mother Arlene had a complication-free pregnancy, and none of her seven ultrasounds revealed anything abnormal. But when Zoe was delivered at a hospital in their small hometown of Plymouth, Pa., it took her grandmother, Johanna, only one look to realize that all the prenatal tests had missed something very significant. Johanna says Zoe looked pasty and had a webbed neck, and scans done in the hour after her birth revealed that, in Johanna's words, "the hospital had never seen anything like Zoe before." Less than 24 hours later, she was flown to a hospital in Hershey, Pa., where she was diagnosed with VACTERL syndrome, an extremely rare collection of birth defects. When combined, the worst of the defects was likely to cause Zoe's rib cage to collapse in on itself, a situation that would prevent her lungs from growing and would most likely end up suffocating her.

    Alphabet soup
    VACTERL is an acronym for vertebral, anal, cardiac, tracheal, esophageal, radial (lower arm bone) and/or renal (kidney) and limb—making Zoe's problems sound more like the index of a medical textbook than the problems of a single patient. She had atrial and ventricular septal defects (holes between the upper and lower chambers of her heart, which have since closed on their own), has only one kidney, and her intestines are twisted. But the "V" for vertebral was the most troubling letter in the acronym for little Zoe. She was missing the three vertebrae containing the nerves that provide bowel and bladder control; two additional vertebrae in her neck were fused; she had severe scoliosis (curvature of the spine); three hemivertebrae (or missing pieces of spine); and several ribs that were fused, plus one rib that hadn't formed at all.

    From the day she was born, Zoe needed extensive medical treatment. When she was 6 months old, some of her vertebrae were surgically fused in an effort to lock her spine in place and stop the progress of her scoliosis. By the time she turned 2, however, it was obvious that the spinal fusion had failed and that the progress of Zoe's curvature was impairing her lung capacity and causing heart problems. The situation was quickly becoming life threatening.

    A doctor in Hershey told Arlene that her daughter's only hope was an investigational procedure known as a titanium rib implant. "When I heard the word 'investigational,' I was upset, but I realized this was the only thing that would help Zoe," says Arlene.

    The Lamberts did some research on the Internet and found that the surgery had been developed by Robert Campbell, MD, an orthopaedic surgeon at Christus Santa Rosa Children's Hospital in Texas. Instead of traveling to and from Texas, they decided to come to Boston Children's Hospital, where John Emans, MD, chief of the Division of Spinal Surgery, and his colleagues had been hand-selected by Campbell as the second team in the world to perform the innovative surgery.

    Braces for the chest
    The idea behind the titanium rib procedure is deceptively simple: it performs the same basic function on a patient's chest and ribs that braces perform on teeth. The patient's fused ribs are first separated, and then a lightweight titanium rod is attached vertically to the ribs and/or spine to act as a stabilizer and keep the bones in place. The rod is lengthened regularly, expanding very much like a curtain rod, to keep the fused ribs apart, enlarge the chest, keep the spine more aligned and allow the chest and lungs to continue to grow.

    With the help of a multi-disciplinary team that includes specialists from General Surgery and Pulmonology, Emans has performed more than a dozen initial titanium rib operations and many subsequent lengthenings. These experiences, combined with those of Campbell's team, have shown that the surgery works well for major chest and rib abnormalities such as severe congenital rib fusions and scoliosis. And unlike spine fusions, a common procedure for people with scoliosis, the titanium rib procedure allows for more growth of the chest and spine. "For children who have small chests as a result of these problems, this can be a life-saving procedure," says Emans. "And instead of having the spine of a 2-year-old their whole life as a result of fusion surgery, the titanium rib allows them to grow more than they otherwise would."

    What surgeons don't know at this point is how their patients will fare in the long run. "It will take a number of years—maybe as many as 15—to see how these children do," says Emans. "Many of them were under the age of 2 at the time of the procedure, so we'll need to wait until they have stopped growing to fully evaluate the results."

    Campbell, who has performed the operation on more than 130 children, feels that surgeons have only touched the surface of the titanium rib procedure's potential. "It works well for children with VACTERL, and is a superb way to replace ribs, especially in kids with cancer of the chest wall," he says. "But I think we're going to be surprised by how many uses this surgery will have in the future. For the first time, we're able to treat three-dimensional problems with three-dimensional thinking and techniques."

    Just as Campbell advised Emans on his titanium rib procedures, he sees Emans performing the same function for surgeons at other qualified hospitals throughout the country. "Dr. Emans will serve as a mentor so other programs can begin performing this surgery," says Campbell. "He is a superb teacher and never ceases to amaze me with his ingenuity."

    The pair are currently recruiting patients for an FDA-mandated clinical trial that is expected to come to an end later this spring, and Emans hopes that the surgery will be generally available at qualified centers around the country by the end of the year.

    Straightening the S
    Living within a few miles of a qualified center has been a blessing for Susan Wilson and her daughter, Samantha. Shortly after Samantha's birth, Timothy Hresko, MD, assistant in Orthopaedic Surgery at Children's, found that she was suffering symptoms of respiratory distress and quickly realized that her chest and lungs had stopped growing. He diagnosed her with congenital kyphosis, an abnormal, backward curvature of the spine. This was compounded by the fact that she also had short ribs, some of which were fused while others had large spaces between them.

    In 2000, Emans performed titanium rib surgery on both the right and left sides of Samantha's chest. Since then, Susan has noticed a vast improvement in her daughter's breathing and is amazed how different Samantha looks. "Before the operation she was shaped like an 'S' and doctors said she would never sit straight or walk well," she says. "But now she stands straight and does everything a typical 3-year-old can do."

    Because of the other physical problems related to her VACTERL, Zoe Lambert is not yet able to do all of the same things as other 4-year-olds. She will need intensive rehabilitation to learn how to control her bowels and bladder, and her twisted intestines continue to cause problems that have led her to be rushed to many hospitals, including Children's, for emergency treatment. But Emans' work has taken what were the most dangerous of her problems—those of her spine and ribs—and moved the "V" for vertebral to the bottom of a long list of concerns.

    Zoe now tests near the normal range on physical therapy exams and is able to climb on and off chairs—something she couldn't do before surgery. It is the simple things, though, that have made the biggest difference in Zoe's life and the lives of her mother and grandparents. Every year for more than a decade, the Lamberts have gone to the beach for summer vacation, and last summer, Zoe, who has always loved her trips to the ocean, was finally able to get in the water and play with all the other kids. Zoe's mother put her in bathing suits and little bikinis, the outline of the titanium rod showing faintly through the skin of her small body. Asked to describe her feelings at seeing her daughter grow up and be able to enjoy things like playing at the beach, Arlene states it simply: "She's here. And if it wasn't for Dr. Emans and the surgery, she may not have been."

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