A neuromuscular condition has caused you to develop a curvature of
your spine called scoliosis. Scoliosis and other back problems are
treated by a bone and joint specialist called an "orthopaedic
surgeon". The purpose of this booklet is to give you some information
concerning scoliosis and the possible treatments for it. We hope that
knowing a little bit about scoliosis treatment will help you and your
parents be better prepared for your visit with the orthopaedic
What is Scoliosis?
Scoliosis is a problem with your backbone, or spine, where it begins
to bend sideways and twist. Scoliosis can happen for many different
reasons. Neuromuscular diseases can cause scoliosis because the
muscles that support the spine start to weaken and can no longer hold
your back in its usual straight up and down position. Scoliosis can
occur in either the upper back (thoracic), lower back (lumbar), or,
very rarely, in the neck (cervical region). Scoliosis can develop
slowly or quickly depending on its cause.
Why Worry About Scoliosis?
Some people with neuromuscular conditions will develop scoliosis. Due
to muscle weakness in the back and chest, you may no longer keep your
spine in an upright, straight position. As the curve gets bigger, it
changes the way you sit and where the pressure points are underneath
you when you sit. These changes require frequent modifications of
your wheelchair (if you are using one) to keep you well supported,
prevent skin problems, and to keep you as independent as possible.
While your chair can help support your spine, it cannot stop the
progression of the curve.
We also worry about scoliosis because if the curve becomes too
large it can crowd your heart and lungs making it hard for you to
breathe properly. This may cause lung problems like pneumonia.
If your curvature is not too large or growing too fast, the doctors
may recommend a back brace. Bracing may be an option if you have a
neuromuscular condition other than Duchenne Muscular Dystrophy. The
use of a brace while you're young can help keep the curve from
getting too big until you go through your growth spurt in your early
teens. Back braces may have to be changed as you grow and your spine
If the doctors feel bracing will not be helpful, or if your curve
is still getting bigger even after you wear a brace, sometimes they
will recommend surgery. Surgery will straighten your spine and to
prevent the curve from getting any worse. The doctors decide it's
time for surgery when your curve gets to a certain size, which is
usually about 45-50 degrees.
Deciding to have surgery is a big decision and can be very
frightening for you and your family. This booklet was prepared to
answer your questions about surgery if you and your doctor decide it
is necessary. If you have any further questions, please write them
down so you will remember to ask your doctor.
Advantages of Early Surgery
We know that people with scoliosis and neuromuscular conditions can
develop problems with their lungs, problems with sitting balance and
with back pain. Having your spine straightened before these
conditions develop may save you lots of problems later on. If you are
already having lung problems, surgery can improve your breathing and
prevent problems like pneumonia. Also, straightening your spine will
help you keep your balance better, help prevent back pain and pain
while sitting, which will allow you to sit comfortably for longer
periods of time. All of this can improve your quality of life.
Changes and Risks Related to Surgery
As a result of your surgery, you might be taller because your spine
will be straighter. Being taller may make it harder for you to fit
into your car or van. Being taller may also interfere with eating
because your arms must move a longer way to get to your mouth.
There are always risks involved with the surgery itself, and with
being put to sleep for your surgery. Some of these risks include the
possibility of infection, or problems with the metal rod the doctor
will attach to your spine. The chance that these complications will
occur is very low, and we do everything we can to prevent them. The
doctors and nurses will make sure you know what the risks are and
answer all your questions before your surgery.
How the Surgery Works
The goal of surgery is to straighten your spine to prevent breathing
and sitting problems. To do this, the surgeon will use a long curved
stainless steel rod, called a Luque (loo key) rod. The doctors attach
the rod to your spine. In most patients, the rod is attached to the
back of the pelvis. This is done if the hips are slanted or tipped.
We look at the x-rays we took before your surgery to determine where
your curve starts and where it ends, and also what shape the rod
should be. That way we know where on your spine to attach the
Bone from the bone "bank" is placed alongside of the rod. This
bone will grow into the spaces between your backbones (vertebrae) and
will hold them straight. This is called a "spinal fusion". Until
these bones heal together, they need to be supported and kept from
curving again. This is the purpose of the Luque rod. The rod is
attached to your backbone and holds everything straight until the
bones are fused together.
All patients lose some blood during surgery, and sometimes you need
to get some back afterward. You will get blood either from our blood
bank, or, if you're medically able, you may donate your own blood
ahead of time. This is called "autologous donation". The doctors and
nurses will talk to you about donating and receiving blood when you
set up your surgery date.
What Happens on Your "Work Up" Day?
One to three days before surgery you will come to the Orthopaedic
Clinic for what we call your 'pre op workup'. You can plan on being
at the hospital approximately five hours on this day. The doctor will
listen to your heart and lungs, and in general make sure you are in
good shape for surgery. If you are sick on this day, or a few days
before, notify the doctor, as he may decide to postpone your surgery
until a later day.
The nurses and doctors will ask you and your parents some
questions and answer any that you may have. This will enable them to
give you the best care while you are hospitalized.
Urine and blood samples will be obtained. After the blood sample
is taken, a bracelet will be applied to your wrist or sent home with
you. It is very important to keep the band clean and dry so that your
name and hospital number are legible. Remember to bring the band with
you on your surgery day, or another blood sample will need to be
You will have several x-rays taken. A medical photographer will
take some pictures of you and your back, so we can compare how you
look before and after surgery.
You may need to go to a special laboratory for an EEG
(electroencephalogram) so they can check the nerve messages going
through your spine before and during your surgery. They do this by
attaching special wires to your head and your legs. This doesn't
hurt. The wires will be removed after this first test, and then put
back on the day of your operation.
You will also spend some time talking to the surgeon who will do
your operation, as well as to the doctor who will be putting you to
sleep. This doctor, the anesthesiologist, will explain to you how
they put you to sleep, and will answer any questions you might have
about that. You'll talk about any medications that you take on a
daily basis. The anesthesiologist may instruct you to take these
medications with a small sip of water the morning of your operation.
You should tell the doctors or nurses about any allergies you may
have to medications, foods, tape or latex (rubber products).
The nurses will describe what will happen the day of your surgery
and give you general information about being in the hospital. You
should make plans to be in the hospital for 7 days.
You will be instructed on a small breathing device (incentive
spirometer or voludyne), that you'll use after surgery. This device
will assist you to breath deeply and cough to clear your lungs. Deep
breathing and coughing will decrease the chance of pneumonia. After
surgery, you will roll side to side without bending or twisting your
back. This is called logrolling (turning as a unit). The nurses will
help you, but it is a good idea to practice this before surgery. The
nurse will review leg and ankle exercises to keep blood moving
through your legs. The nurse will also discuss methods of pain
relief, including the use of a PCA pump (patient controlled
analgesia) to give you pain medicine through a needle into your vein
You will be given a booklet in the Orthopaedic Clinic on PCA pumps
prior to surgery.
Scales for rating your pain will be shown to you and you will be
asked to choose one to use you are in the hospital.
The operating room people will call you the day before your
surgery to let you know what time you need to be at the hospital. You
do not need to spend the night before your operation in the
The nurses will give you special scrub brushes to scrub your back
and right hip. You'll need to do this for 5 minutes both the night
before surgery and in the morning before you come to the hospital.
This will help remove any germs on your skin and cut down on the risk
of infection during your surgery. The scrub brush has iodine soap in
it, so if you're allergic to iodine let us know so we can give you a
different type of soap. You can do the scrubs in the shower or tub,
but will need help from another person to make sure you get your
whole back clean. You will need to wash your hair the night before
surgery, and remove any finger or toenail polish.
Your stomach needs to be empty when you go to sleep, and so 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 really thirsty.
You cannot have a sunburn, bad rash, or sores on your back at the
time of surgery, as this could be a potential source of
Make sure all your questions are answered before you leave the
hospital on your work up day.
The Day of Surgery
Before you come to the hospital, you need to wash your back again
with another scrub brush for five minutes. Brushing your teeth and
rinsing out your mouth is OK, but do not swallow the water. Do not
When you get to the hospital, you'll need to check in at the pre
surgical area on the 5th floor (Elevator H). The nurse will record
your vital signs (temperature, pulse and blood pressure), talk
briefly with you and apply your identification and blood bands.
You'll get into a hospital gown and the nurses will help you onto a
special bed. From here you will 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. The operating room
transport person will take you to the 5th floor Presurgical Care Unit
(PSCU) when it is time for your surgery.
While you are in surgery, your family can wait for you in the
Boulware Day of Surgery Lounge (Elevator H to 6th floor). The doctors
will talk to them periodically during and after your operation and
let them know how you're doing.
A nurse will greet you as you arrive in the operating room. The
room is sometimes cool and noisy. Please let them know if you are not
comfortable. Warm blankets are available. In the operating room, you
will be connected to many monitors and a needle will be put into a
vein in your arm. This is called an "IV." The anesthesiologist will
give you medications to put you to sleep. Once you are asleep, the
doctor will begin the operation. A mask may be placed over your nose
and mouth to help you breath. After you are asleep, a tube is placed
in the back of your mouth and throat to provide air to your lungs.
This tube will be removed before you wake up. You will lie on your
stomach on the operating bed with your arms and legs supported with
pads. Your back will be scrubbed before starting the operation. The
operation generally takes 4 hours, but you will be in the operating
room a total of 4-5 hours.
A tube, called a Foley catheter, is placed in your bladder while
The Foley drains urine from your bladder so the nurses can measure
it and keep track of how well your body is getting rid of fluids.
This tube will be removed on Post Op Day 3 (three days after your
A drain is placed in the incision during surgery. This is called a
Hemovac. It's a small tube that drains excess fluid from your back
into a little collection container. The doctors will remove it on
post op day 2. There is a mild burning feeling when the drain is
Post Anesthesia Care Unit (PACU OR Recovery Room)
When you wake up you will be lying on your back in the recovery room
area. You'll already be in your bed. You may feel stiff from being in
one position for longer than normal. A nurse will check you
frequently and make you comfortable with warm blankets. You will
receive oxygen and be encouraged to take deep breaths to help your
The nurse may ask you to rate your pain on a scale of 1 to 10. Let
the nurses know if you feel sick to your stomach (this isn't unusual
after surgery). Medicine can be given to make you more comfortable if
you have pain or are feeling sick to your stomach.
You will get x-rays while you are in the recovery room.
You will be in the recovery room for 2-4 hours, or until the
anesthesiologist says you're awake enough and doing fine. If you are
16 or younger, your parents or 2 adults may see you in the recovery
room. If the doctor thinks you need to be hooked up to monitors
overnight (in case of breathing or heart problems) you will go to the
Pediatric Intensive Care Unit (PICU).
Your parents may see you in the PICU. Your doctor will decide when
you are ready to come to your room on the Orthopaedic Unit from
either the PACU or PICU. You will be taken to the Orthopaedic Unit in
Orthopaedic Unit After Surgery
After surgery the nurses will frequently take your vital signs (blood
pressure, temperature, respiration rate, and pulse). This is so
important that they will even wake you up during the night to do
The doctors and nurses will be touching your hands and feet, and
asking if you have any numbness or sleepy sensations in your arms or
legs. Let the nurse or doctor know if your arms and legs tingle or
feel numb or just plain funny.
The IV that was started in the operating room will give you fluids
during and after surgery. The IV will remain in until you are able to
eat and drink, usually 4 to 5 days after surgery.
During surgery the anesthetic slows the motion of your intestines
and may cause you to be nauseated or even vomit after surgery. The
nurses and doctors will listen to your stomach every few hours to
determine if your bowels are working.
You may not drink anything until the doctor determines that your
bowels are returning to normal. This may take up to 4 - 5 days. You may
rinse your mouth out with water and brush your teeth. If you drink or
eat before your bowels are ready, you may become nauseated and
You'll have pain medicine to keep you comfortable. You're IV will
be hooked up to a PCA (patient controlled analgesia) pump that has a
tube of pain medicine inside. This syringe is attached to your IV
line and continuously gives you a small amount of pain medicine. If
you still are uncomfortable, there is a button to push to give you a
little extra pain medicine. If you are unable to push this button, a
family member or the nurse may push it for you. You may need an
occasional shot in the muscle for pain along with the PCA. This
depends on how severe your pain is. Your PCA will continue until your
stomach wakes up and you are able to drink and take pain medicine by
Antibiotics will also be given through your IV. The antibiotics
will decrease the chance of infection. The antibiotics will continue
until one dose after your hemovac drain and foley catheter are
We'll take a sample of blood from you each morning after surgery
for 3 days to check your blood count. If you're short on red blood
cells, it might be necessary to give you a blood transfusion.
In the operating room a big bandage is applied to your back. This
will be changed on post op day 2 and removed on post op day 3. The
stitches used to close your wound are under your skin. Your body will
just absorb them, so they do not have to be removed. Pieces of tape
called 'steri strips' are placed over your incision after surgery,
and will gradually fall off on their own after you go home.
The day of surgery you will be flat in bed. The nursing staff will
help you move from side to side by "logrolling" 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 onto your
back or your side using pillows to help keep you comfortable.
You'll be sitting up in bed on the first day after surgery. We'll
make sure you sit up 3 times that day to get your body used to
sitting up again. The second day after surgery you will stand to get
into a wheelchair. If you are unable to stand, you will be carefully
lifted out of bed into a wheelchair.
A Child Life Specialist will come to your room and offer you
activities to do while you are in bed. When you can be up and out of
your room, you will be invited to attend group activities in the
Your parents and/or caregiver will be taught how to take care of
you. The nursing staff will encourage them and you to do as much as
you are comfortable with. Please ask the nurses any questions you
You'll have some more x-rays before you go home, usually in 5-7 days
after surgery if no problems arise. No cast or brace is usually
necessary following surgery.
After surgery you can sit at only a 60 degree angle for 6 weeks.
Your own wheelchair may be used if the back reclines 60 degrees and
the arms can be removed. If your chair does not do this, we can help
you rent one. The rental chair will be a standard wheelchair. It will
not have any pads or supports to help you sit, and so you will have
to use pillows for support.
If you are unable to stand, you will be lifted into the chair by 3-6 people, depending on how much you weigh. At home, your parents or
caregiver may lift you by the "fireman" method, and we'll teach them
how to do this. Or, you could use a mechanical lift. You may not be
lifted under your arms for 6 months or until your spine heals
Keep your incision clean and dry. The steri strips will gradually
fall off. You may shower two weeks after surgery if your back
incision is well healed and has no drainage. Direct the water stream
on your front and shoulders, letting it trickle down your back. Do
not direct the water stream on your back incision. You may not get
into a tub or swimming pool for 6 months after surgery. Your back
incision may be numb for 4 to 6 months.
You'll get a prescription for pain medicine for when you go home.
You should also continue taking your iron as you were before
You may return to school in 2-4 weeks depending on how you feel.
The people at school who help you may need instructions on how to
lift you if you cannot stand. They may also need to know if there are
changes in your height so adjustments can be made (for example, your
desk may need to be higher).
Your first return appointment will be about 6 weeks after your
discharge from the hospital, then 4 months, 6 months, and one year
after surgery, and then every year after that. It's really important
that you return for your scheduled appointments.
If any of the following problems occur before your appointment,
notify your doctor right away:
- fever, chills, redness, warmth, or foul smelling drainage at the surgical site
- increase in pain
- numbness, tingling, or increased weakness in your arms or legs
- change in bowel or bladder control.
We hope you've found this booklet helpful. Please let us know if
you have any questions or concerns. The orthopaedic nurses can be
reached at (319) 356-3844 (Orthopaedic Clinic). The orthopaedic
surgeon can be reached at (319) 356-1872, 8 a.m. to 5 p.m., Monday
through Friday. If you have urgent questions at any other times,
please call (319) 356-1616, and ask to speak with the orthopaedic
resident on call. If you need to change or confirm your return
appointment, call Orthopaedic Scheduling at (319) 356-2223.