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There are many ways you can help children and their families get the care they need.
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 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:
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.
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:
At Boston 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:
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.
Your child's treatment team will closely monitor her status before, during and after surgery. Among the precautions taken by the surgical team are:
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:
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.
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:
In the case of a more extensive and complicated surgery for tethering caused by a large tumor or mass:
The neurosurgeons in Boston Children's Tethered Spinal Cord 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.
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. Boston 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:
Our Occupational Therapy Service provides inpatient and outpatient assessments and therapy to help children:
Boston Children's Center for Continence of Urine and Bowel (CUB) is staffed by experts from several Boston Children's departments—including Urology and Gastroenterology—and provides:
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, Boston Children's Hospital has several other resources designed to give your family comfort, support and guidance.
Boston 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.
Boston 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 Division of Developmental Medicine 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:
Boston 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:
Please note that neither Boston Children's Hospital nor the Tethered Spinal Cord Program unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.
Learn more about the Tethered Spinal Cord Program and other support services at Boston Children’s.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”