What is a tethered cord?
The "cord" in "tethered cord" is the spinal cord. The spinal cord is the bundle of nerves that carries messages between the brain and the body.
Before a baby is born, the spinal cord is normally the same length as the bones that surround it. These bones are called the spinal column. As the baby grows, the spinal column gets longer than the spinal cord. This means the spinal cord has to be able to move freely inside the spinal column. But in some babies, the bottom end (tail) of the spinal cord is "tethered" or tied down to the bottom end of the spinal column. This is called tethered cord.
Tethered cord means the spinal cord cannot move inside the spinal column. As the child grows taller, the spinal cord is stretched. If the nerves are stretched, they may not work properly, and this can cause problems for your child. Your child may need an operation to help the spinal cord move freely.
The information on this page will help you explain tethered cord to your child, using words your child can understand.
Tethered cord can cause lack of bladder and bowel control or problems walking
The most common signs of a tethered cord are the following:
- Lack of bladder control: When nerves in your child's spinal cord are stretched, your child may not be able to feel when they need to pee. They may wet their pants.
- Lack of bowel control: The nerves that control the bowel may also be stretched. Your child may not be able to control their bowel movements.
- Back pain
- Curving of the spine
- Trouble walking as well as before
What causes a tethered cord?
The cause of a tethered cord is not always known. We do know that:
- It is sometimes found with spina bifida.
- It is present from birth in some children.
Tethered cord happens when something catches hold of the spinal cord and does not let it move freely. Usually, one of these things catches the cord:
- A tight ligament: There is a ligament, like a string, in your child's back called the filum terminale (say: FILL-um term-in-ALL-ay). Normally it is stretchy, but sometimes it is tight and tethers the cord.
- A scar: If your child has had back surgery, a scar can form around the bottom end of the cord. This can "catch" the spinal cord.
- Bone: Sometimes, a piece of bone can catch a part of the spinal cord.
- Fat: Sometimes, fat grows in and around the spinal cord and catches hold of it.
Your child will need tests
Usually, parents notice one or more signs and bring their child to the doctor. If the doctor thinks your child has a tethered cord, they will do some tests.
MRI
In this test, a magnet and radio waves are used to take pictures of the inside of your child's body. The test does not hurt. Sometimes your child will need to take medicine through a needle for one of the following reasons:
- to help your child to stay still during the test
- to help the doctor to see the inside of the back more clearly
MRI requires your child to stay still while the pictures are being taken. Some children need sedation medicine to help them keep still during the tests.
Urology consultation
If your child is having problems with peeing, the doctor may send you to see another doctor called a urologist. This doctor will do tests on your child's bladder.
Tethered cord may be treated with surgery
When the stretching of the spinal cord causes problems, your child may need surgery (an operation). This operation involves opening the back and the spinal column in order to release the spinal cord so it can move freely. The operation is called a laminectomy. If the operation is not done, the stretching may get worse. The problems caused by the stretching may also get worse.
If your child's spinal cord has already been damaged, surgery may not fix the damage.
What happens during the operation
Your child will have a special "sleep medicine" called a general anesthetic. This will make your child sleep through the operation. An incision (cut) is made on your child's back.
The surgeon will cut a piece of bone from the spinal column where the cord is tethered. Then the surgeon will cut and release what is holding the cord to the spinal column. This will let the spinal cord move freely.
The operation takes about three hours.
After the operation
After the operation, your child will spend about two to four hours in the Post Anaesthetic Care Unit (PACU). Then your child will go back to the Neurosurgical Unit.
Your child will have a bandage on their back. The nurse will check the bandage often. The nurse will also check your child's temperature, heart rate, blood pressure, breathing and leg movements.
Your child will have a thin tube in their arm. This is called an intravenous (IV) tube. It allows fluids and medicines to be given directly into your child's bloodstream.
Your child needs to lie flat for two to three days
For the first two to three days after the operation, your child needs to lie flat in bed. This is to prevent leakage of fluid from around the spinal cord. Do not let your child sit up until the surgeon says this is OK.
The nurse will turn your child from side to side about every two to four hours. This will help prevent sores that may develop from lying in bed. It will also help prevent any chest problems after surgery.
Your child will have medicine for pain
Your child may feel pain at the operative site. Usually, your child will have morphine through their intravenous line (IV) for one or two days. This should control the pain. If it does not control the pain, speak to your child's nurse.
After one or two days, the morphine drip will be slowed down and your child will take pain medicine by mouth.
Your child may also learn other ways to control pain, such as blowing bubbles or relaxation breathing. Ask your nurse or the Child Life specialist to help you and your child learn how to do this.
Your child will probably stay in hospital for about one week
Each child gets better at a different rate. Most children stay in hospital for about one week. After your child gets better from the operation, your child's surgeon will decide when they can go home.
Going home
Before you take your child home, the surgeon or the nurse will explain how to take care of your child at home. The instructions will include the following:
- how to take care of your child's incision (cut)
- what to do with your child's stitches or staples
- how to tell if your child's incision becomes infected
- other things to watch for
- what activities your child is able to do
Taking care of your child's incision
Watch your child's incision (cut) to make sure it is healing well. It is all right if the incision gets wet in the bath or shower. Your surgeon and a nurse will discuss with you how long to wait before your child can have a bath or shower.
Taking care of your child's stitches
How your child's staples or stitches are taken out depends on the type of staple or stitch that was used. Your surgeon or nurse will tell you what type of stitches were used.
- If your child has staples or stitches that need to be taken out, your family doctor will need to do this. The stitches should be taken out about seven to 10 days after the operation. Staples should be removed about 10 days after the operation. Your surgeon will tell you when they need to come out.
- If staples were used, you will be given a special remover to take to your family doctor.
- If your child has the kind of stitches that dissolve on their own, you can see your family doctor to have the incision line checked, but the stitches will not need to be taken out.
Following up after the operation
The surgeon will see your child in a follow-up clinic visit about six weeks after your child goes home. The appointment may be made for you when your child is discharged. If not, call the neurosurgery clinic to make an appointment.
Write down the date and time here:
After your child goes home
Tell your child's surgeon if you notice any of the following things. These mean that your child's cut could be infected:
- fluid leaking out of the surgical cut
- fluid collection (bulging) at the cut
- redness
- swelling
- smelly discharge from the cut
- fever
Also watch your child for the following:
- changes in bladder or bowel function
- back pain
- trouble walking
- changes in movement of the arms and legs
- irritability (crankiness)
If you have any concerns, contact your child's surgeon.