Departments of Nursing and Orthopedic Surgery
UI Stead Family Children’s Hospital
Peer Review Status: Internally Peer Reviewed
Last Revised: April 2017

A neuromuscular condition has caused you to develop a curvature of your back (spine) called scoliosis. Back problems are treated by a bone and joint doctor called an orthopedic surgeon. The purpose of this booklet is to give you information about scoliosis.  This includes how we can treat this problem.  We hope this booklet will help you and your parents be ready for your visit with the doctor.


Diagram of scoliotic spine and a normal spine

What is Scoliosis?

Scoliosis is a problem with your spine, causing it to bend sideways and twist. Scoliosis can develop for many different reasons.  Neuromuscular diseases can cause scoliosis because the muscles that support the spine become weak.  The weak muscles are not able to hold the back straight.  Scoliosis can happen in either the upper back (thoracic), lower back (lumbar), or very rarely, in the neck (cervical area).  Scoliosis can develop slowly or quickly depending on its cause.

Treatment

Some people with scoliosis may benefit from wearing a brace.  Your doctor will help you decide if this is a good choice for you.  If the spinal curvature gets large enough your doctor may recommend surgery called "posterior spinal fusion with instrumentation." Doctors typically suggest surgery when the curve is around 50 degrees. The purpose of this surgery is:

  • To stop the progression of the curve
  • To stabilize that part of the spine

If the curve is not treated and keeps getting worse, it can cause physical deformities.  These changes can lead to back, lung and heart problems later in life.  Straightening your spine will also help you keep your balance better while sitting.  This will allow you to sit comfortably for longer periods of time.  All of this can improve your quality of life. 

Deciding to have surgery is a big decision.  It can be very scary for you and your family. This booklet was written to help answer your questions about surgery.  If you have other questions, please write them down so you will remember to ask your doctor. 

Risks Related to Surgery

There are always risks involved with any surgery and being put to sleep during surgery. The chance that any complications will happen is very low.  We do everything we can to prevent complications. The doctors and nurses will make sure you know what the risks are and answer all your questions before surgery.

All patients lose some blood during surgery. Sometimes you need to get some blood back afterwards. If you do need blood, we can get it from our blood bank. 

Special x-rays taken before surgery help the doctor decide where your spine should be straightened.  During surgery, your doctor untwists your spine and attaches two rods to either side.  He will use special hooks and screws to do this.  In most patients, the rods are also attached to the pelvis.  This is done if your hips are slanted or tipped.

Bone chips from our bone bank are then placed over your spine (called a bone graft). Over the next 6 months, the bone chips grow into the spaces between your backbones (vertebrae) and hold them straight.  They act like cement. This is called a "spinal fusion." Until the bone chips fuse together, and the rods will support your back and keep it from curving again.  Most of the time, casting or bracing is not needed after surgery.

Scoliotic spine and an illustration of steel rods

What Happens on the "Work Up" Day?

One to three days before surgery you will come to the Orthopedic Clinic for what we call your "pre-op workup." You should plan on being at the hospital most of this day. The doctor will make sure you are in healthy for surgery. If you are sick on this day, or a few days before, let the doctor or nurse know.  Your surgery may need to be postponed if you are sick. 

The doctors and nurses will ask you and your parents some questions.  They will answer any questions you have. This will help them to give you the best care while you are hospitalized. They will tell you what will happen the day of your surgery, what to expect after surgery, and give you general information about being in the hospital. You should make plans to be in the hospital for about 3-5 days.

The nurses will talk with you about how to use a breathing exercise device, called an incentive spirometer. We will ask you to use this after surgery. It helps you to ‘exercise’ your lungs by making you cough and breathe deeply. Coughing and deep breathing are very important to help clear your lungs and prevent pneumonia. The nurses will talk about how you'll need to roll after your surgery. This is called logrolling (turning as a unit). They will teach you leg and ankle exercises to keep the blood moving in your legs while you are getting stronger again.  The nurses taking care of you after surgery will also talk about all of these things with you.

A urine sample, blood samples, and X-rays are taken. The nurse will take pictures of your back.  This will help us compare how you look before and after surgery.

The nurse will give you special cloths and explain how to use them the night before surgery. You will need to wash your hair the night before surgery.  If you have long hair you need to put it up.  Pigtails or braids are good suggestions.  All finger or toenail polish should be removed. 

You will go to a special laboratory for an EEG (electroencephalogram).  The EEG shows the nerve messages going through your spine before and during your surgery. The hospital staff do this by putting special wires on your head and your legs. This doesn't hurt. The wires will be taken off after this first test and then put back on the day of your surgery.

You will spend some time talking to the doctor who will be putting you to sleep before your surgery. This doctor, the anesthesiologist, will explain how they put you to sleep.  The doctor will answer any questions you have. You will talk about any medications that you take on a daily basis. The anesthesiologist will tell you about whether or not to take your medications the morning of your surgery with a small sip of water. You should tell the doctors or nurses about any allergies you have to medications, foods, tape or latex (rubber products).

Your stomach needs to be empty when you go to sleep. Therefore, you may not eat or drink anything after midnight the night before surgery. This will help keep your stomach from getting upset afterwards. You may want to avoid salty foods the night before surgery to prevent waking up feeling thirsty.

You cannot have a sunburn, bad rash, or sores on your back at the time of surgery.  These could be a potential source of infection.

Please feel free to ask any questions you might have, even if you think they sound silly or stupid. We want to make sure you know everything you need to before you leave the hospital on your workup day.

The pre-surgical area staff will call you the evening before your surgery to tell you what time you need to be at the hospital. You do not have to spend the night before your surgery in the hospital.

The Day of Surgery

The morning of surgery it is okay to brush your teeth and rinse out your mouth.  Do not swallow the water. Do not chew gum.

When you get to the Stead Family Children’s Hospital, you'll need to check in at the Day of Surgery Admissions (DOSA), take the public elevators to Level 4. The nurse will take your vital signs (temperature, pulse, respiratory rate and blood pressure) and talk briefly with you. You'll get into a hospital gown and the nurses will help you onto a special bed. You will then go back to the EEG lab where they will put the special monitoring wires on your head. Sometimes they will put these wires on in the operating room. 

Surgery

While you are in surgery, your family can wait for you in the Pediatric Surgery Family Lounge (take the public elevators to Level 4). The doctors will talk to them from time to time during your surgery to let them know how you're doing.   They will also talk with them after surgery.

A nurse will greet you as you arrive in the operating room. The room is sometimes cool and noisy. Please let the nurses know if you are not comfortable. Warm blankets are available. You will be connected to many monitors in the operating room.  This will not hurt.  The monitors help the nurses and doctors keep track of how you are doing while you are asleep.  An IV will be placed in a vein in your arm or hand. The anesthesiologist will give you medicine in your IV to put you to sleep. A mask may be placed over your nose and mouth to help you breathe. 

A tube is placed in the back of your mouth and throat to get air to your lungs while you are asleep.  They will put the tube in after you are asleep. Once you are asleep, the doctors will begin the surgery. You will lie on your stomach on the operating bed.   Your arms and legs will be supported with pads. Your back will be washed before starting the surgery. The surgery usually takes about 4 hours, but you will be in the operating room a total of 4 to 5 hours.

A tube, called a Foley catheter, is placed in your bladder while you are asleep. The catheter drains urine from your bladder.  The nurses will measure your urine and keep track of how well your body is getting rid of the urine. This tube will be removed on the first or second day after your surgery. You will be able to use the bathroom normally after the catheter is out.

A drain is placed in the incision during surgery. This is called a Hemovac. It is a small tube that drains extra fluid from your back into a small container. The doctors will remove the drain 2 days after surgery. There is a mild burning feeling when the drain is taken out. 

Pediatric Intensive Care Unit (PICU) and Pediatric Unit After Surgery

When you wake up you will be lying on your back in the Pediatric Intensive Care Unit (PICU).  PICU is located on level 3 of the Children’s Hospital.  You will stay in the PICU until the doctors decide you are ready to go to your room on the pediatric unit.  The breathing tube will be left in your mouth and throat until your doctors feel you are ready to have it removed.  This is typically the morning after surgery.  Your parents can stay with you in the PICU as well as the pediatric unit. 

The nurses will take your vital signs often.  This is so important that they will even wake you up at night to do it. 

Each morning we'll take a sample of blood from you to check your blood counts. If you're low on red blood cells, it may be necessary to give you a blood transfusion. 

The medicine used during surgery may cause you to be sick to your stomach.  You may even throw up after surgery. The nurses will listen to your stomach every few hours.  Your stomach will make noise when it is working again. You may chew gum, which will help your stomach wake up.

You will have pain medicine to keep you comfortable. For the first few days, you'll get this medicine through your IV.  This will continue until your stomach wakes up and you are able to drink and take pain medicine by mouth.

Antibiotics will be given through your IV until your Foley catheter is removed. The antibiotics will decrease the chance of infection.

In the operating room a bandage is applied to your back. This will be removed at home 2 weeks after surgery. The stitches used to close your wound are under your skin. They do not need to be taken out.

For the first 6 hours after surgery you will be flat in bed. After the first 6 hours, the nursing staff will help you move from side to side every 2 to 4 hours. When turning, your shoulders and hips must go all at the same time, like your back is one big log. The nurses will help you to move either onto your back or your side.  They will use pillows to keep you comfortable.

Typically, the day after surgery you will sit up in bed 3 times. You may even get out of bed and sit in a chair.  You will not be able to sit all the way.  You need to go slow to get your body used to sitting up again.  A Physical Therapist will help your parents learn how to transfer you.    

While you are in the hospital your parents will be taught how to take care of you. We’ll encourage you to do as much as you are comfortable doing. Please ask the doctors or nurses any questions you have.

Child Life Specialists help find activities you can enjoy while you are in the hospital.  They will come to your room and help you find things to do to pass the time you are in bed.  When you can be up and out of your room, you will be invited to attend group activities.

The following is a list of things you might want to bring to the hospital with you.  They will help make your stay as comfortable as possible. 

  • Clothes, pajamas, robe, and slippers
  • Button down shirts or loose fitting shirts
  • Shampoo/conditioner and a hair brush
  • Toothbrush and toothpaste
  • Pillows: body pillows work well for positioning. You will need extra pillows for the car ride home
  • Special stuffed animal or blanket
  • iPods or CD’s with your favorite music for relaxation
  • DVD/VHS movies
  • Chapstick

Going Home

We will take x-rays of you sitting up before you go home. This is usually 3-5 days after surgery.

Keep your incision clean and dry. You can take a shower 2 weeks after surgery if your back incision is well healed and has no drainage. Do not stand and let the water spray right onto your back incision.  Let the water hit your front and shoulders then trickle down your back.

Your back incision may be numb for several months.

We will send you home with a prescription for pain medicine, stool softeners, and iron. 

For the first 6 weeks after surgery:

  • No sitting up greater than 60 degrees.
  • No flexing your hips greater than 60 degrees with personal cares.
  • You will need a wheelchair with a reclining back. We will help you rent a wheelchair if your wheelchair doesn’t recline.  If you use a rented wheelchair, you will need extra pillows for support.
  • Take pain medication as prescribed.  Your need for pain medication will gradually lessen.  No non-steroidal anti-inflammatory medications (ibuprofen, Advil, Aleve) for six months.  You may use Tylenol (acetaminophen) once you are done taking your prescription pain medications.

For the first 6 months after surgery:

  • No lifting under the arms. We will teach your parents how to lift you.  They will need to support your back and buttocks.  A mechanical lift can also be used.
  • No lying on your stomach.
  • No dental work.

The nurses will go over what you can and can not do in more detail.  If you are unsure about a certain activity, please ask.  It is important you follow your restrictions to heal properly.

You may return to school in 2-4 weeks depending on how you feel.  The people at your school may need instructions on how to lift you.     

Your first return appointment will be about 6 weeks after your discharge from the hospital, then 3 months, 6 months, and one year after surgery. Then yearly visits after that. It is important that you return for your scheduled appointments.

If any of the following problems occur after surgery, please notify your doctor: 

  • Fever or chills
  • Redness, warmth, or foul smelling drainage at the surgical site
  • Increase in pain
  • Numbness, tingling, or weakness in your arms or legs
  • Change in bowel or bladder control

Contacting Your Doctor

If any of the following problems occur after surgery, please notify your doctor:

  • Fever or chills
  • Redness, warmth, or foul smelling drainage at the surgical site
  • Increase in pain
  • Numbness, tingling, or weakness in your arms or legs
  • Change in bowel or bladder control

Your Doctor

Orthopedic Clinic Nurses

Orthopedic Scheduling

Nights, Weekends, Holidays

  • Ask to speak with the Orthopedic Resident on call
  • 319-356-1616

Medical Services