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Tethered Spinal Cord

  • The good news is that tethered cord is a very treatable condition, especially when diagnosed and treated early in the child's life. While surgery might not be able to restore neurological function that has already been lost, children with this disorder can go on to live full and healthy lives with proper care and follow-up. The experts at Boston Children's Hospital are here to help your family at every step of the way.

    The spinal cord serves not just one essential function, but many. A powerful bundle of nerves, it works with the brain to send messages that control the functions of every part of the body. 

    When a child's spinal cord is compromised somehow—for example, by a spinal cord injury—the effects can be far-reaching. In the case of tethered spinal cord syndrome, (also referred to simply as “tethered cord”), a child's spinal cord is abnormally attached to the tissues around the spine (most commonly, at the base of spine). As a result, the spinal cord can’t move freely within the spinal canal, leading to possible nerve damage and problems with her ability to move freely.

    Tethered cord syndrome can seriously impact your child’s daily life, and can also tax the emotional health of your family. The good news is that with proper medical and surgical care, a tethered spinal cord can be (managed well to ensure the best possible quality of life for your child. 

    A child with tethered spinal cord syndrome may face a number of difficulties, including:

    • back pain
    • leg pain
    • weakness or numbness in the legs or feet
    • difficulty standing or walking
    • fecal and/or urinary incontinence


    The information on the following pages is a good starting point to help you learn more about tethered spinal cord syndrome, and to give you and your family a general idea of what to expect in the weeks and months ahead.

    How Children’s Hospital Boston approaches tethered spinal cord syndrome

    Our team in Children’s Tethered Spinal Cord Syndrome Program provide the full scale of diagnostic, consultation, surgical and follow-up care services for children with tethered cord. Our neurosurgeons and other clinicians are considered to be at the top of their field, and we have many years of experience in studying and treating tethered spinal cord syndrome in children of all ages.

    Some of our particular areas of expertise include:

    Here at Children’s, your child is never merely a patient. Our neurosurgeons, neuroscience nurses, imaging specialists and care team are committed to using our extensive experience to help your child manage his tethered spinal cord syndrome and go on to lead a rich and fulfilling life. We treat your child as an individual, and we deliver care that supports the particular needs and circumstances of your entire family. 

    At Children’s, we use the most sophisticated technology available to help reduce the bulk of tethering masses, while limiting manipulation of the spinal cord itself. Examples include:

    • the contact YAG (yttrium-aluminum-garnet) and CO2 lasers, which use high-energy beams of light to puncture or cut away precise areas of tissue

    • the operating microscope, a highly sensitive microscope capable of great levels of magnification and comprised of special, sterilized parts. This microscope is used in virtually all untethering surgeries at Children’s.

    • an ultrasonic bone-cutting scalpel for gentle removal of bone, as needed 

    Tethered spinal cord syndrome: Reviewed by Mark Proctor, MD
    © Children’s Hospital Boston; posted in 2011

  • When picturing what happens when a child is affected by tethered spinal cord syndrome, it may help to imagine a balloon attached to a long string. If the string of the balloon becomes stuck or tangled—perhaps on the overhang of a door, or in the frame of a chair—the balloon can no longer turn and flow freely with the breeze: Its range of motion is greatly reduced. 

    In a normal spinal canal:

    • The spinal cord is covered by a tough membrane called the dura.

    • A substance called cerebrospinal fluid, produced by the brain, flows over and around the spine and spinal cord, cushioning it from trauma.

    • Before birth, the spinal cord grows along with the infant, gradually moving upward into the spinal canal.

    • Around the time of birth, the spinal cord stops moving upward, but continues to hang freely in the fluid-filled “tube” of the spinal canal

    • The cord bends and flexes with the child, moving up and down to accommodate sitting, standing, stretching and other motions. 

    When a child has tethered spinal cord syndrome, the spinal cord becomes affixed to the surround tissues for one of the following reasons:

    • The spine, spinal cord and/or spinal canal did not develop properly (for example, because of spina bifida.

    • The filum terminale, which connects the spinal cord to the backbone, thickens or hardens, pushing down on the cord.

    • The child has undergone spinal surgery, resulting in scarring that weighs down the spinal cord.

    • A tumor has formed on the spinal cord.

    • A fatty piece of skin (called a dermoid or epidermoid) grows into the spinal cord, creating the same effect as a tumor although it is not cancerous.

    As a result, the cord can’t flex or bend within the spinal canal. 

    Though the exact process is still not fully understood, neurological problems can develop in response to a tethered spinal cord. Experts believe that these problems are linked to abnormal stress and strain on the nerve roots at the lower end of the spinal cord; as they are taxed, the nerves themselves are damaged.

    Research also indicates that the ongoing strain on the nerve roots may thin the nourishing, oxygen-rich blood that reaches the spinal cord nerves and their cells: Because the nerves are not getting the blood and oxygen they need, they are weak and more prone to injury. 

    As the condition progresses, a child with tethered spinal cord syndrome may eventually experience:

    • weakness in the legs or feet
    • problems controlling his bowels or bladder
    • pain in his back or legs
    • a curvature of the spine or scoliosis 

    Causes 

    What causes tethered spinal cord syndrome?

    Causes of congenital tethered cord

    When a child has congenital tethered spinal cord syndrome—meaning he’s born with the condition—it’s due to a complicated biological process, beginning when the embryo is first growing in the mother’s uterus.

    • The cells at the bottom of the embryo (caudal cell mass) play an important role in the development of the spinal cord and many other organs. These cells influence the development of the genital and rectal structures, bladder, lower kidneys, bones of the lower spine and the skin covering the lower back.

    • As the embryo is forming, the cells in the caudal cell mass can experience some type of disruption or error.

    • The error in these cells sets off a chain reaction of changes in the spinal cord and any or all of the other parts of the body influenced by these cells.

    • This cause-and-effect process explains why some children with tethered spinal cord syndrome have unusual growths or markings on the skin of the lower back, while others may have abnormalities in the anus or genitals. 

    Certain congenital syndromes that affect a newborn's organ systems can also cause tethered cord. These syndromes include:

    • VATER (vertebrae, anus, trachea, esophagus and radial and/or renal) syndrome, in which a baby is born with abnormalities in three or more of the above-referenced areas

    • VACTERL (vertebrae, anus, cardiac, trachea, esophagus, radial and/or renal and limb) syndrome, in which a baby is born with anomalies in the heart and limbs as well as three or more organ systems affected by VATER syndrome. Learn how Children's treated one patient with VACTERL syndrome

    Causes of acquired tethered cord

    Tethered spinal cord syndrome can also be an acquired condition, meaning it affects a child after her birth. An infant or older child may develop tethered cord because of:

    • damage to the spine, spinal cord and/or spinal canal caused by another condition—most often, spina bifida

    • past surgery on the spine that has caused scar tissue to form on the dura surrounding the spinal cord, weighing it down

    • a condition called occult tight filum terminale, in which the long, thin bundle of nerve tissue joining the spinal cord to the backbone becomes thick or hardened and presses downward on the cord

    • a tumor on the spinal cord

    • a fatty mass of skin growing into the spinal cord

    Signs and symptoms

    What are the symptoms of tethered spinal cord syndrome?

    Symptoms in newborns

    Because the cells that form the spinal cord in utero also affect the development of many other structures in the lower body, a baby born with tethered spinal cord syndrome may have:

    • an unusual dimple, raised lump, discoloration or patch of hair on the lower back
    • abnormal anatomy of the genital organs
    • abnormal anatomy of the anus
    • one leg or foot that is noticeably longer or larger than the other 

    Symptoms in infants and older children

    When a child develops tethered spinal cord syndrome later in infancy or childhood, warning signs may include:

    • pain in the lower back
    • weakness or numbness in the legs or feet
    • problems standing or walking
    • urinary incontinence
    • fecal incontinence

    FAQ

    Q: Will my child be OK?
    A: 
    Tethered spinal cord syndrome can affect different children in very different ways, depending on:

    • the cause of the tethering
    • how much of the surrounding tissues in the spine are affected
    • whether any nerve damage has occurred before treatment

    The good news is that tethered cord is a very treatable condition, especially when diagnosed and treated early in the child’s life. While surgery might not be able to restore neurological function that has already been lost, children with this disorder can go on to live full and healthy lives with proper care and follow-up. 

    Read more about children’s long-term outlook.

    Q: Does Children’s offer testing for tethered spinal cord syndrome when a baby is still in the womb?
    A: When a child’s tethered spinal cord is congenital (present at birth), prenatal ultrasound may be able to detect the disorder. Children’s provides prenatal ultrasonography through our Advanced Fetal Care Center

    Q: Can anything be done to ensure my child’s spine does not “re-tether” after surgery?
    A: Unfortunately, while several techniques have been devised in the hopes of preventing or minimizing the risk of a child’s spinal cord becoming tethered again later in life, none have proven to be successful (and without associated complications) in long-term studies. Research continues into this important area. 

    Q: Will my child definitely need surgery?
    A:
    Surgery is the only treatment that can actually “untether” the spinal cord, but the need for surgery will be based on careful discussion with a neurosurgeon.  

    Q: Can my child’s lost functions be restored through treatment?
    A: Unfortunately, while surgery can untether the spinal cord, it cannot restore functions—including bowel and bladder control and sensation and mobility in the legs and feet—that may have already been impaired or lost. With rehabilitation and support, children with these complications can regain some function and go on to active and healthy adult lives.

    Learn more about physical therapy and other support services at Children’s.


  • How is tethered spinal cord syndrome diagnosed?

    Diagnosing newborns

    When tethered spinal cord syndrome is suspected in a newborn under 3 months old, the easiest and fastest way to confirm the diagnosis is with an ultrasound of the baby's back.

    An ultrasound:

    • uses high-frequency sound waves to take pictures of a part of the body

    • doesn’t require the child to receive any sedation or anesthesia

    • shows the spinal canal in great detail, since the bones in the baby's back are very thin at this age

    • will usually also show where the end of the spinal cord is (if it is dropped down at a low level, tethering is likely)

    • can show if the spinal cord is pulsating in a natural movement within the canal (if it is not moving, a tethering obstruction may be holding it taut)

    • can reveal any tumors or fatty masses at the end of the spinal cord 

    Diagnosing infants and older children

    Because the bones in an infant's back become thicker with age, ultrasounds are not usually helpful in diagnosing tethered spinal cord syndrome in children older than 3 months. In these children, the most effective diagnostic procedure is Magnetic Resonance Imaging (MRI).

    MRI:

    • uses a combination of powerful magnets, radiofrequency waves and special computers to generate three-dimensional images of the spinal canal and its structures

    • is not painful, but does require sedation to ensure the child stays still and in the proper position

    • is usually not done until the child is between 3 and 6 months of age, when he is big enough to ensure more subtle changes in his anatomy can be detected by the MRI (and when the risks of anesthesia are lessened)

    • can sometimes be recommended in babies under 3 months if symptoms of tethered spinal cord are significant and pronounced (for example, if a dimple or hair mass on the back is very deep, very large, inflamed or draining); in these babies, tests need to be conducted immediately to prevent an infection reaching the spinal canal or the onset of meningitis

    Other tests

    Depending on your child's individual symptoms and circumstances, your treating clinician may also recommend other tests, such as:

    • X-rays of the spine—x-rays, which use small doses of radiation to take pictures of a part of the body, are ordered only in special situations for a child with tethered cord (for example, to detect unusual changes in bone structure).

    • Computed Tomography (CT) scans of the lower back—this type of imaging, which uses a combination of X-rays and powerful computers, is sometimes prescribed to give more detailed information about an abnormality in the anatomy of the child's spine. CT can be a useful tool in planning surgical procedures for some children.

    • urodynamics testingsince the nerves in the bladder are linked to the nerve cells at the bottom of the spinal cord, many children have problems with bladder control. Urodynamics studies measure how well the nerve supply from the child's spinal cord to his bladder is working. In addition to confirming nerve damage caused by tethered cord, these tests can also help clinicians plan surgical procedures and anticipate (and help families manage) future problems with incontinence.

  • When a child is diagnosed with tethered spinal cord syndrome, the entire family is involved in the treatment process. We are dedicated to providing outstanding care that treats your child as an individual and are committed to including you in the treatment process at every step of the way. 

    Here at Boston Children's Hospital—the birthplace of pediatric neurosurgery—you and your child will be cared for by experts from several key disciplines, all working together to develop the best possible treatment plan. Our neurosurgeons, nurses, radiologists, anesthesiologists and other health professionals involved in our dedicated Tethered Spinal Cord Syndrome Program are specially trained in surgical and medical procedures for children, with an emphasis on using minimally invasive operations whenever possible.

    Untethering surgery

    For many children, surgery to “untether” the spinal cord is the best (and only) treatment for the disorder. Surgical approaches for tethered spinal cord syndrome can vary widely in duration and complexity, depending on:

    • the cause of the tethering
    • how much surrounding tissue is affected
    • the child's overall health and well-being 

    Thick or fatty filum terminale

    When the tethering process is caused by a thick or fatty filum terminale connecting the spinal cord to the backbone, the untethering surgery is relatively quick and simple. The neurosurgeon makes a small incision in the child's lower back and creates an opening between two bones in the lower spine. This exposes the filum terminale, and the surgeon cuts the problematic connection. The procedure is straightforward with minimal risks of complications or damage to the normal nerves in the vicinity.

    Most children who undergo surgery for a thickened or fatty filum terminale only need to stay in the hospital for two to three days. They typically need some medication to manage pain for the first couple of days after the operation.  

    Tumors or fatty masses

    Untethering surgery is more involved in children who have tumors or fatty deposits on the spinal cord. For some of these children, the mass responsible for tethering the spinal cord has grown well into the tissues of the back, enveloping sensitive nerve roots responsible for strength and sensations in the legs, bowel or bladder. This type of surgery poses a risk of impacting normal, healthy nerves and causing neurological problems. Other possible complications can include:

    • difficult healing at the site of the incision because of insufficient muscles and ligaments overlying the child's spinal cord
    • leakage of cerebrospinal fluid from the incision site
    • meningitis 

    At Children's, we use the most sophisticated technology available to help reduce the bulk of tethering masses, while limiting manipulation of the spinal cord itself. Examples include:

    • the contact YAG (yttrium-aluminum-garnet) and CO2 laser, which use high-energy beams of light to puncture or cut away precise areas of tissue

    • the operating microscope, a highly sensitive microscope capable of great levels of magnification and comprised of special, sterilized parts. This microscope is used in virtually all untethering surgeries at Children's.

    • ultrasonic bone cutting scalpel if bone removal is needed

    • spinal cord monitoring

    Most children who have tethering surgery involving a large mass are in the hospital for a 4-7 days. We take great caution to ensure proper healing of the wound. In addition to pain medication, we may also recommend that your child have an extended period of bed rest. 

    Your treating neurosurgeon can provide you and your family with the most specific and detailed recommendations for your child's surgical treatment. You are an essential part of the treatment team, and should always feel comfortable asking questions about the potential costs—as well as the likely benefits—associated with the proposed surgery. 

    Precautions taken during surgery

    Your child's treatment team will closely monitor her status before, during and after surgery. Among the precautions taken by the surgical team are:

    • monitoring the function of nerves in the legs, bowel and bladder

    • continuously testing the bodily structures in the area of the surgery to ensure no healthy, normal organs or tissues are divided during the operation

    • checking the electrical signals transmitted by the rectal muscles during surgery (the nerves supplying the rectum also supply the bladder)

    • using transparent drapes to cover the child during surgery, allowing clinicians to see and feel muscle contractions throughout the procedure

    Medication

    Tethered spinal cord syndrome itself can't be treated with medication. But for some children, the pain associated with tethered cord can be managed with one or more of the following types of medication:

    • analgesics (painkillers)—these drugs relieve pain by acting on the nervous system. They do not cause sedation.

    • muscle relaxants—these drugs prevent painful spasms by suppressing muscle contractions. They can be especially helpful in reducing spasticity (.pdf file) caused by conditions such as spina bifida and cerebral palsy, and can be beneficial in some instances of urinary incontinence.

    Your clinician will tell you whether medication is safe and advisable for your child—and, if so, which drugs and dosages are recommended. Medications should only be taken exactly as prescribed by your child's doctor.

    Learn more about commonly prescribed medications.

    Monitoring and long-term follow-up

    The exact course of treatment and follow-up after your child's untethering surgery depends on the type of surgery and the extent of the tethering.

    After a relatively straightforward surgery—for example, to cut a thickened filum terminale:

    • Your child's neurosurgeon typically follows his progress with yearly examinations until he's walking and toilet-trained.
    • There is usually very little risk of scarring or other complications that can cause the spinal cord to become tethered again. 

    In the case of a more extensive and complicated surgery for tethering caused by a large tumor or mass:

    • There is a greater risk that scarring after the operation can cause the spinal cord to again become tethered. Based on data in our Tethered Spinal Cord Syndrome Program, the risk is estimated to be as high as 15 to 20 percent during the first 20 years of the child's life.

    • Re-tethering is most likely to occur when a child is between ages 4 and 6 or 8 to 13 (likely because of growth spurts during these periods).

    • Your child's neurosurgeon will follow your child with regular examinations until adulthood.

    The neurosurgeons in Children's Tethered Spinal Cord Syndrome Program have extensive experience treating these disorders, caring for hundreds of children every year. We are always available to answer questions and address any concerns you may have. 

    Rehabilitation and support services

    Unfortunately, while surgery can release the tethered spinal cord, it may not reverse neurological damage sustained earlier in the child's life. This means that some children will continue to have incontinence, pain or weakness in their legs or feet and difficulty standing and walking.

    If this is the case, rehabilitative and support services can make a tremendous difference. Children's offers the following programs to assist patients and families living with complications of nerve damage:

    Our Physical Therapy Service provides inpatient and outpatient exams, evaluation and treatment to help children:

    • improve physical impairments
    • gain better posture and balance
    • enhance endurance and mobility
    • learn beneficial developmental activities
    • achieve the best possible level of physical functioning

    Our Occupational Therapy Service provides inpatient and outpatient assessments and therapy to help children:

    • learn to use adaptive equipment, such as walkers and braces
    • improve motor skills
    • improve range of motion
    • learn good self-care practices
    • participate in developmental play exercises

    Children's Center for Continence of Urine and Bowel (CUB) is staffed by experts from several Children's departments—including Urology and Gastroenterology—and provides:

    • state-of-the-art diagnostic and testing services

    • multidisciplinary care plans customized for each child

    • consultations with mental and behavioral health professionals to address the emotional aspects of incontinence as well as the medical concerns

    Coping and support

    When your child has tethered spinal cord syndrome, your family is dealing with many different concerns and worries. Not only are you focused on meeting all of your child's medical needs; you are also grappling with a significant emotional and psychological toll that affects every member of your family.

    In addition to the clinical information offered on this page, Children's Hospital Boston has several other resources designed to give your family comfort, support and guidance.

    Resources for patients and families

    Children's Center for Continence of Urine and Bowel is a special program bringing together experts from multiple disciplines—such as Urology, Gastroenterology and Neurology—to assess and treat children with partial or complete incontinence related to congenital problems of the brain, spine, anorectal system or urological system.
     

    Children's Complex Care Services deliver essential medical care to children with birth defects, genetic disorders and other multifaceted health care needs. Call 617-355-6162 for more information.
     

    Our Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:

    • being sick
    • facing uncomfortable procedures
    • handling pain
    • taking medication
    • preparing for surgery
    • changes in friendships and family relationships
    • managing school while dealing with an illness
    • grief and loss

    Children's Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:

    • short-term therapy for children admitted to one of our inpatient units
    • parent and sibling consultations
    • teaching healthy coping skills for the whole family
    • educating members of the medical treatment team about the relationship between physical illness and psychological distress

    Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (.pdf file). Topics in the booklet include:

    • talking to your child about her condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child's illness
    • adjusting to life after treatment

    Helpful links

    Please note that neither Children's Hospital Boston nor the Tethered Spinal Cord Syndrome Program at Children's unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

  • In the Children’s Hospital Boston Tethered Spinal Cord Syndrome Program and throughout our Department of Neurosurgery, our treatment is informed by our scientific research. In fact, Children’s is home to the world’s most extensive research enterprise at a pediatric hospital.

    Our neurosurgeons—who are also members of the Harvard Medical School faculty—conduct ongoing research into the causes of, and treatments for, tethered cord and many other disorders affecting the brain, spine and nervous system. We also collaborate with visionary scientists at Boston’s universities and throughout the surrounding biomedical community.

    While our individual researchers’ projects cover a broad spectrum of topics, all of our researchers share one goal: to find the best ways to treat children of all ages who are fighting these diseases, while never losing sight of the individual needs of each patient and family.

    Here are just a few of current Children's neurosurgery research projects underway with potential implications for children with tethered cord:

    • improving long-term outcomes for children who have suffered neurological trauma
    • examining the role of certain growth factors in spinal cord injuries
    • tracing the activities of cell-signaling pathways in the central nervous system

    Learn more about our research.

    Clinical trials

    Children’s is known for pioneering some of the most effective techniques in the field of neurosurgery. A significant part of our success comes from our commitment to research—and to advancing the frontiers of what’s possible in neurosurgery by conducting clinical trials. 
     

    Children’s conducts hundreds of clinical trials at any given time. Clinical trials are studies that may involve:

    • evaluating the effectiveness of a new drug therapy
    • testing a new diagnostic procedure or device
    • examining a new treatment method for a particular disease
    • taking a closer look at the causes and progression of specific conditions

    While children must meet strict criteria in order to be eligible for a clinical trial, your child may be eligible to take part in a study. Before considering this option, you should be sure to:

    • consult with your child’s treating physician and treatment team
    • gather as much information as possible about the specific course of action outlined in the trial
    • do your own research about the latest breakthroughs relating to your child’s condition

    Taking part in a clinical trial at Children’s is entirely voluntary. Our team will be sure to fully address any questions you may have, and you may remove your child from the medical study at any time.

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