What is Tethered Cord Syndrome (TCS)

Tethered cord syndrome is a type of neurological disorder that affects the spinal cord. Normally, the spinal cord hangs freely inside the spinal column. TCS happens when the spinal cord is abnormally attached to the spinal column and cannot move freely inside the spinal column.

As a child grows, the spinal cord stretches. In children with TCS, this stretching may damage nerves of the spinal cord and cause pain, loss of movement, and other problems.

This condition may be present at birth (congenital TCS) or develop after birth (acquired TCS).

What are the causes?

This condition may be caused by:

• A birth defect that results in abnormal development of the spinal cord, such as spina bifida.
• A thick attachment between the tail of the spinal cord and the tailbone.
• A tumor or fatty growth on the spinal cord.
• Spinal surgery.
• An infection that causes scar tissue.
• An injury to the spine.

What are the signs or symptoms?

Symptoms of this condition usually develop early in life, but they may not develop until adulthood. Symptoms vary from child to child. They include:

• Loss of bladder or bowel control (incontinence).
• Frequent urinary tract infections.
• Weak legs.
• Trouble walking.
• Numbness or tingling in the lower legs.
• Pain in the lower back that gets worse with activity.
• Deformities of the legs, feet, or spine, such as:
  • An abnormal curve to the spine.
  • A dimpled, discolored, or hairy area in the lower back.

How is this diagnosed?

This condition is diagnosed with imaging tests, such as:

• An MRI.
• A CT scan.
• An ultrasound.
• A myelogram. This is a kind of X-ray exam in which a dye is used to examine the spinal cord and nerve roots.

How is this treated?

Surgery is the only treatment for this condition if it is causing symptoms. The exact surgery depends on the type of attachment. Early surgery can prevent permanent nerve damage.

Contact a health care provider if:

• Your child develops new pain.
• Your child has tingling or numbness that gets worse.
• Your child has weak muscles.

Get help right away if:

• Your child develops severe pain.
• You child loses sensation in any part of the body.

Tethered Cord Release Surgery

Tethered cord release is a surgery to cut (release) abnormal tissue that attaches the end of the spinal cord to the spinal canal (tethered cord). Normally, the spinal cord hangs freely inside the spinal canal. A tethered spinal cord is usually caused by a thickened or tight thread of tissue (filum) that attaches the end of the spinal cord to the tailbone (sacrum). A tethered cord limits spinal cord movement, causes the spinal cord to stretch, and reduces blood supply, which can lead to spinal cord damage.

Your child may need this surgery if a tethered cord causes:

• Pain.
• Weakness or numbness in the legs.
• Difficulty walking.
• Difficulty controlling bowel and bladder functions.

What are the risks?

Generally, this is a safe procedure. However, problems may occur, including:

• Infection.
• Bleeding.
• Allergic reactions to medicines or dyes.
• Damage to other structures or organs.
• Damage to the spinal cord that makes symptoms worse.
• Leakage of fluid from the spinal canal (cerebrospinal fluid).
• Failure of the procedure.

What happens before the procedure?

Staying hydrated

Follow instructions from your child’s health care provider about hydration, which may include:

• Up to 2 hours before the procedure – your child may continue to drink clear liquids, such as water or clear fruit juice.

Eating and drinking restrictions

Follow instructions from your child’s health care provider about eating and drinking, which may include:

• 8 hours before the procedure – have your child stop eating foods.
• 6 hours before the procedure – have your child stop drinking formula or milk.
• 4 hours before the procedure – stop giving your child breast milk.
• 2 hours before the procedure – have your child stop drinking clear liquids.

Medicines

Ask your child’s health care provider about:

• Changing or stopping your child’s regular medicines. This is especially important if your child is taking diabetes medicines or blood thinners.
• Taking medicines such as aspirin and ibuprofen. These medicines can thin your child’s blood. Do not give your child these medicines before the procedure if your child’s health care provider instructs you not to.

General instructions

• Your child will have imaging tests of the spine to plan the procedure. These tests may include:
  • X-rays.
  • MRI.
  • Myelogram.
  • Ultrasound.
  • CT scan.
• Ask your child’s health care provider how your child’s surgical site will be marked or identified.

What happens during the procedure?

• To reduce your child’s risk of infection:

• Your child’s health care team will wash or sanitize their hands.
  • Your child’s skin will be washed with soap.
• An IV tube may be inserted into one of your child’s veins. Your child may be given antibiotic medicine through the IV tube.
• Your child will be given a medicine to make him or her fall asleep (general anesthetic). Your child may also be given a medicine to help him or her relax (sedative).
• An incision will be made in the middle of the lower back, over the spine.
• Muscles over the spine will be moved out of the way.
• Bones that make up the spine (vertebrae) will be separated. In some cases, a piece of a vertebra may be removed (laminectomy).
• The covering of the spinal cord (dura) will be opened.
• Any attachments to the spinal cord inside the canal will be cut.
• Any fatty growths or cysts in the canal will be removed.
• The dura will be closed.
• The incision will be closed with stitches (sutures) or skin glue.
• A bandage (dressing) will be placed over the incision.

The procedure may vary among health care providers and hospitals.

What happens after the procedure?

• Your child’s blood pressure, heart rate, breathing rate, and blood oxygen level will be monitored until the medicines your child was given have worn off.
• Your child will continue to have an IV tube inserted in one of his or her veins. Your child may be given antibiotic medicine and pain medicine through the IV tube.
• Your child may need to lie flat in bed for a few days.
• Your child may have an MRI of the spinal cord.

Tell your child’s health care provider about:

• Any allergies your child has.
• All medicines your child is taking, including vitamins, herbs, eye drops, creams, and over-the-counter medicines.
• Any problems your child or family members have had with anesthetic medicines.
• Any surgeries your child has had.
• Any medical conditions your child has.
• Any recent fever or cold symptoms.

Care After Tethered Cord Release Surgery

Here is the information about how to care for your child after the procedure. Your child’s health care provider may also give you more specific instructions. If you have problems or questions, contact your child’s health care provider.

What can I expect after the procedure?

After the procedure, your child may have:

• Mild discomfort.
• Slight bruising.
• Some swelling over the incision.

Follow these instructions at home:

Incision care

• Follow instructions from your health care provider about how to take care of your child’s incision. Make sure you:
  • Wash your hands with soap and water before you change your child’s bandage (dressing). If soap and water are not available, use hand sanitizer.
  • Change your child’s dressing as told by your health care provider.
  • Leave stitches (sutures), skin glue, or adhesive strips in place. These skin closures may need to stay in place for 2 weeks or longer. If adhesive strip edges start to loosen and curl up, you may trim the loose edges. Do not remove adhesive strips completely unless your health care provider tells you to do that.
• Check your child’s incision area every day for signs of infection. Check for:
  • More redness, swelling, or pain.
  • Fluid or blood.
  • Warmth.
  • Pus or a bad smell.

General instructions

• Give your child over-the-counter and prescription medicines only as told by your child’s health care provider.
• Do not give your child aspirin because of the association with Reye syndrome.
• Do not let your child take baths or swim until your child’s health care provider approves. Ask your child’s health care provider if your child can take showers or sponge baths. You may need to keep the incision area dry.
• Have your child return to normal activities as told by your child’s health care provider. Ask your child’s health care provider what activities are safe for your child.
• Have your child return to his or her normal diet as told by your child’s health care provider.
• Keep all follow-up visits as told by your child’s health care provider. This is important.

Contact a health care provider if:

• Your child has chills or a fever.
• Your child has more redness, swelling, or pain around the incision.
• Your child has fluid or blood coming from the incision.
• Your child’s incision feels warm to the touch.
• Your child has pus or a bad smell coming from the incision.
• Your child has pain that does not get better with medicine.
• Your child has a headache.
• Your child starts to have weakness, tingling, or numbness in the legs.

Get help right away if:

• Your child has a severe headache.
• Your child has a stiff neck.
• Your child suddenly develops weakness or numbness in the legs.
• Your child loses bladder function or bowel function.
• Your child who is younger than 3 months has a temperature of 100°F (38°C) or higher.