Treatment & Care
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.
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
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
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.
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
- 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
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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 aspecial 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
Children’s Center for Families is dedicated to helping families locate the information and resources they need to better understand their child’s particular condition and take part in their care. All patients, families and health professionals are welcome to use the Center’s services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
The Children’s chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child’s treatment.
Children's International Center is a dedicated resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at firstname.lastname@example.org.
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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.