Tethered Cord Release

Tethered cord syndrome (TCS) is a progressive neurological condition that results from vertical traction and stretching of the spinal cord. It often presents as low back pain in the early stages and progresses to sensory, motor, bowel and bladder control malfunctions. Signs and symptoms of tethered cord include back pain, leg pain, bowel problems (constipation), bladder problems (not being able to potty train), abnormal curvature of the spine, leg weakness, loss of sensation in the legs, difficulty walking, muscle wasting in the legs, foot deformities, numbness/tingling in the feet and spasms/tremors in the legs. Congenital lesions, such as spinal lipomas, split cord malformations or myelomeningoceles are associated with TCS. Correction of these congenital spinal lesions can result in postsurgical scarring, which subsequently leads to TCS in up to 30% of patients.

Untethering (tethered cord release) is the gold standard treatment for TCS. However, untethering carries risks of spinal cord injury and re-tethering.

As first-line treatment, patients presenting with TCS typically undergo direct spinal cord untethering, often as young children or infants. Prompt untethering after diagnosis leads to improved clinical outcomes. The surgical risks of untethering include cerebrospinal fluid (CSF) leak and, more rarely, neurological injury.

This is done using general anesthesia and is usually tolerated very well. A bladder catheter will be placed once the child is asleep.

The surgery involves making an incision in the midline of the lower back and creating a small bony opening called a laminotomy. The covering of the spinal cord is opened and using special nerve-monitoring equipment we can stimulate the nerve roots and determine where to release the cord. Once released, the cord is able to float freely within the spinal canal.

The risks include but are not limited to a small amount of bleeding, infection (especially if the child picks open the incision), cerebrospinal fluid leak, new neurological deficits (such as worsening bowel and/or bladder function, leg weakness) or persistence or worsening of existing deficits and anesthetic complications. Pseudomeningocele (a collection of cerebrospinal fluid [CSF] under the skin) and CSF leakage are the most common complications. 

Prior to surgery, a urodynamic study is needed to assess bladder function. This test is preformed by the urology department. This will tell us if the child has bladder dysfunction (i.e., a neurogenic bladder with small bladder capacity and uninhibited contractions) that may improve with a tethered spinal cord release. It will also provide us with a baseline for future comparison.

You will receive communication before coming to the hospital with details about where to go the day of surgery and specific instructions for the day before and day of surgery. This information will include details about home medications and when to stop eating and drinking.

The surgery typically takes two hours, and your child will spend 2 – 3 nights in the hospital. Your child will go to the recovery room immediately after surgery so they can “wake up” after anesthesia. Your child will have a catheter in their bladder to drain their urine while they are sleepy at first and additional monitoring devices to closely watch their blood pressure and heart rate. They will come out of surgery very sleepy, and their medical team will likely give them medicine that makes them extra sleepy for the first 12 hours after surgery to help with pain control. Your child will be given fluids and pain medication through a tube in the vein (IV) until they are able to take them by mouth. Your child will also receive IV antibiotics for 24 hours after the surgery and IV steroids for the first 48 hours. Because steroids can upset a child’s stomach, they will be given medication to help to decrease stomach upset.

Once awake, your child will go to a regular pediatric hospital floor (not the ICU). They will be allowed to drink and eat slowly as soon as they are able, starting with a clear liquid diet. 

Your child will be flat in bed (head at same level as the feet) for the first 24 hours after surgery to help minimize pressure on the incision and to prevent headache while their CSF replenishes itself. Your child may log roll and lie on either side or on their belly.

The bladder catheter placed at the time of surgery will remain in place until your child is able to sit up after the surgery. Your child will be started on a bowel regimen (using Miralax) as soon as possible after surgery to prevent constipation.

The day after surgery, the head of bed will be gradually elevated and your child will be monitored for headache. If your child complains of a headache, the head of the bed will be lowered until the headache resolves. If the headache persists after lowering the head of the bed, we will give your child more fluids and/or a dose of caffeine. Once the headache is gone, we will gradually begin increasing the head of the bed again until your child can tolerate sitting upright.

Our staff is specially trained on this diagnosis and are experts in the care of tethered spinal cord surgery. We know it can be a scary time, and we have a team of medical professionals who are available to answer any questions or discuss any concerns that you might have.

Discharge from the hospital is dependent on the individual child.

In general, we expect the child to be able to urinate independently after their bladder catheter is removed, have a bowel movement with the aid of gentle laxatives, have their pain well controlled on oral pain medications, tolerate eating and drinking without vomiting and move their legs at baseline. 

Your child is usually out of school for two weeks after surgery. 

Children should not participate in physical activity (no swinging, jumping, climbing or running) for 4 – 6 weeks after surgery. They will be given a school excuse if necessary. Walking is okay and encouraged if able. 

No bending or twisting at the waist, and no lifting more than 5 – 10 pounds at home.

There will be a follow-up appointment two weeks after surgery.

Reasons to call the neurosurgery office include: 

The back is often sore and stiff right after surgery. This should gradually improve and be relieved by the muscle relaxer and pain medications prescribed for your child. Continue to have your child do the exercises you were shown by the physical therapist while at the hospital.

Tiredness and fatigue are also very common and will gradually improve with time. It is common for it to take up to three months before your child feels back to normal. Make sure they have plenty of rest during the day and eat healthy foods (avoiding candy, soda and fast food). Set a regular bedtime and wake-up time to help them get plenty of sleep.

A physical therapy evaluation will be ordered the day after surgery to help with walking.