Tethered Cord Syndrome: What to Expect for Your Child's Surgery

What is tethered cord syndrome?

Tethered cord syndrome (also called fastened cord syndrome) is a condition in which the spinal cord is not able to float freely within the spinal column because of an abnormal (unusual) attachment to tissue surrounding it. This causes stretching of the spinal cord as your child grows, leading to extra stress on nerves. This can cause many different symptoms called tethered cord syndrome.

What are the symptoms of tethered cord syndrome?

Depending on your child’s age, symptoms of tethered cord syndrome vary. In some people, these symptoms may not be noticeable until adulthood.

Newborns and infants

• Unusual dimple or bump near the lower part of the spine
• Uneven gluteal fold (crease between the buttocks)
• Skin discoloration
• Tuft of hair on lower back

Children and adults

• Pain in the lower back or legs
• Numbness or tingling in legs
• Unsteady standing or walking
• Loss of bladder or bowel control

What is tethered cord surgery?

Tethered cord release surgery is a type of surgery to reduce or remove the tissue that is preventing the spinal cord from moving freely.

What can I expect at the first pediatric neurosurgical appointment?

At your child’s first pediatric neurosurgical appointment, you can expect discussions with the care team about whether surgery is appropriate for your child and whether they need different imaging tests done.

Making the decision for surgery

The care team will evaluate if your child is an ideal candidate for a tethered cord release surgery. The care team will review your child’s symptoms and how tethered cord syndrome is affecting their quality of life. Then, the care team will confirm the tethering of the spinal cord through a spine MRI.

Imaging

Imaging is very important for the diagnosis of tethered cord. Before your child’s first visit, be sure to bring or send any imaging tests of your child’s spine. If no imaging has been done, your child may need a magnetic resonance imaging (MRI) test of their spine before the appointment. This way, the care team can best assess your child’s condition at their first appointment.

What are the risks of this surgery?

As with any surgery, tethered cord surgery has risks and complications. One of the most common complications related to this surgery is wound infection, especially if the incision (cut into the skin) is made around the low back. In some children who have tethered cord syndrome, they may lose control of their bladder or bowels. This can lead to infection if the incision is on the low back.

Another common complication following this surgery is a cerebrospinal fluid (CSF, or the fluid that surrounds the spine) leak outside of its normal circulation. When surgeons operate around the spinal cord, the area where the CSF lies is opened so they can untether the spinal cord. Major or serious complications are uncommon during this surgery. The care team uses neurophysiologic intraoperative monitoring during the entire surgery to ensure your child’s spinal cord still works properly. Neurophysiologic intraoperative monitoring is when doctors place electrodes (wires with a sticker on one end) on your child’s head, arms and legs. These electrodes connect to a computer that lets doctors know how well the nerves in your child’s head, arms and legs are working throughout the surgery.

The care team will talk with you before discharge (when your child goes home after surgery) about signs and symptoms of common complications, such as infection and/or cerebrospinal fluid leak.

How do I schedule my child's surgery?

The surgical scheduler will work with you and family to coordinate a surgical date that fits best into your and your child’s schedules. School-age children are typically out of school for 2 weeks. When possible, the care team can plan surgery close to school vacations.

What can I expect for the surgery?

A few days before surgery

• A nurse will call you for your child’s anesthesia screening 1-2 days before their scheduled surgical date. During this call, the nurse will help decide which type of anesthesia is best for your child and if your child may have any risks with anesthesia.
• Your child will also need a COVID-19 PCR test 48 hours (2 days) before surgery. The nurse will help schedule the COVID-19 PCR test.

During surgery

• Your child will be asleep under general anesthesia (medicine to make sure your child is sleeping safely and comfortably during surgery) for the entire procedure. The incision is made in the lower end of the spine.
• The care team will place a urinary catheter to help urine flow out of your child’s body during and after surgery. A urinary catheter is a thin tube that goes into the bladder through the urethra (opening in the body where urine flows out). Urine flows out through the tube and collects in a bag outside the body.
• Throughout the entire surgery, the care team will check how your child’s spinal cord is working properly. This lessens the chance of any major complications caused by damage to the spinal cord.

After surgery

• Your child will be admitted into the Pediatric Intensive Care Unit (PICU) for the first night.
• During the first 24 hours, your child will remain flat on their back to prevent fluid leak from the incision. The next day, your child sit up and the care team will check whether your child has a headache. If they do experience a headache, your child will lay back down flat.
• Your child’s urinary catheter will be removed. Your child will be encouraged to urinate on their own. This may take a few attempts, so it is important to not become discouraged after their first try.

A few days before surgery

• Following a tethered cord release surgery, children are typically discharged in 1-2 days after surgery. Because the incision is lower on the back around a part of the spine that does not bear your child’s body weight, pain is limited. This means a shorter post-operative (post-op, or after surgery) stay in the hospital and faster recovery time.
  
  For your child to be discharged, they must meet the following:
  
  • Eat or drink on their own
  • Urinate on their own
  • Off IV medications
  • Not vomiting
  • Walk on their own (if appropriate for age)

What can I expect after surgery?

Common post-op medications at home

Scheduled medications for pain relief during the early post-operative period at home include:

• Acetaminophen (Tylenol®)
• Ibuprofen (Advil® or Motrin®)
• Diazepam (Valium®) to prevent muscle spasms

There may be additional pain medications given as needed for breakthrough pain. The care team is well educated in providing pain management options based on the Enhanced Recovery After Surgery (ERAS) protocol. ERAS is a set of steps to follow to help people recover better and faster after surgery.

Early post-op care instructions

• Incision: If your child has dressings (bandages) on their incisions, keep these on for 2 days after surgery. Then, you may remove them. Some incisions may have small paper tapes called Steri-strips®. These should not be removed. They will fall off on their own. Your child’s sutures (stitches) are dissolvable and will disappear in 2-4 weeks after surgery.
• Shower: Your child can shower 48 (2 days) hours after surgery. Putting the incision underwater (for tub baths or swimming) should not happen until at least 4 weeks following surgery.
• Return to school/sports: Children are typically out of school for 2 weeks after surgery. The care team will check whether your child can return to gym or sports at their 6-week post-op visit with the surgeon. If they are doing well and their incision appears to be well-healed, they may be cleared to return to play.

Follow-up appointments

• 2-3 days after surgery: After discharge from the hospital, you will receive a phone call from our nurse practitioner to check in on how your child is doing.
• 2 weeks after surgery: You and your child will then return to the office for an in-person visit with our nurse practitioner. At this appointment, the nurse practitioner will check how the incision is healing and how your child is managing their pain.
• 6 weeks after surgery: Your child will return for an in-person visit with the surgeon. At this time your surgeon will assess if your child is able to return to gym and sports. If your child is doing well, you will schedule a follow-up with your child’s surgeon at 3 months and at 1 year after surgery.

Will my child's symptoms improve?

For most children who have tethered cord surgery, their symptoms do not progress or get worse. It is not possible to predict whether your child’s current symptoms will reverse. Improvement in back pain and leg pain or numbness usually happens first, and bladder and bowel improvement happen last.

Will my child need another surgery?

There are different types of tethered cord. Depending on the type of tethered cord your child has, they may be more at risk for re-tethering (when the spinal cord reattaches to tissue). The care team will discuss the type of tethered cord your child has when they review the imaging of their spine with you. If re-tethering does occur, your child may need another surgery to fix it.

Rev. 11/2021. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.