Doctors must sometimes remove a leg or foot to treat cancer. This surgery is called an amputation. After the surgery, your child can wear an artificial leg or foot, also called a prosthetic (pros-THET-ick) limb or a prosthesis (pros-THEE-sus).
At St. Jude, we know that having an amputation and getting a prosthetic limb is difficult for you and your child. Rehabilitation Services is here to help. Our goal is to help your child live as fully and independently as possible.
The information below tells you what to expect if your child needs a prosthetic limb and how Rehabilitation Services will help.
What to expect after surgery
Your child will come out of surgery with a cast where the leg or foot was removed. Shortly after surgery, usually the next day, a physical therapist will visit your child. The therapist will:
- Help your child get out of bed and start using crutches, and
- Teach your child how to move as safely as possible with the crutches.
Rehabilitation Services will give your child a temporary prosthesis. The temporary prosthesis is called a pylon. Its purpose is to help your child start walking after surgery.
The doctor will tell you when your child is ready to go home.
Once your child is out of the hospital, a physical therapist will examine your child and create a therapy plan. Physical therapy, also called PT, is important because using a prosthesis takes strength and practice. Working with the physical therapist will help your child get stronger and learn to move better. The physical therapist will tell you how many times your child needs therapy each week.
Your child’s physical therapy visits will be in the Rehabilitation Services gym (rehab gym). Your child will do exercises and activities with the therapist, including practicing how to walk with a prosthesis. Family support and encouragement to take part in physical therapy is important for successful use of your child’s prosthesis.
Your Rehabilitation Services team
The following groups of people will work with you and your child:
- Physical Therapy (PT)
The physical therapy team will help your child gain strength and ability to move, including walking with the prosthesis.
- Custom Fit Innovations (CFI)
Custom Fit Innovations is the company that makes prosthetic limbs for St. Jude patients. You and your child will work with a person called a prosthetist. The prosthetist will fit and measure your child and help you use the prosthesis correctly.
- Wound Care
The wound care nursing team will work closely with your child’s doctor to help your child heal from surgery.
Getting ready for the prosthesis
As your child is healing and getting stronger after surgery, your CFI prosthetist will measure and fit your child for a more permanent prosthesis. ThisThis will help your child walk more naturally than the pylon (temporary prosthesis) does. However, it takes some time to get the right fit and learn to walk well with a prosthesis. How long this takes depends on several factors.
- Swelling – Your child’s remaining limb, also called the residual limb, will swell after surgery. Your Rehabilitation Services team will give you a tight elastic sock called a shrinker or shrinker stocking to help the swelling go down. Your child will be measured for a socket. The socket is the part of the prosthesis that fits over the residual limb. It holds the prosthetic leg in place. It is normal to need several sockets after an amputation, and your child might need to be measured for new sockets several times in the first months after surgery because of swelling.
- Wounds – Your child’s wound care nurse will give you the dressings and treatments needed for healing. Wound healing might take longer if your child has had chemotherapy. This is because chemotherapy medicines can slow down normal healing. If wound healing is a problem, your child might need to wait to use a prosthesis until healing is done.
- Pain – Everyone has a different amount of pain after surgery. If you have questions about pain, talk to the doctor, nurse, or physical therapist. Walking with a prosthetic limb might hurt at first. Pain can affect how well your child can walk or use a more advanced prosthesis. Your team will work together with your child toward the goal of eventual pain-free walking.
- Strength – Your child’s residual limb will be weak after surgery. Doing physical therapy will help your child build strength. This will make walking easier, and your child will need less help. So it is very important to do all the PT exercises at home and during PT appointments.
Choosing the right prosthesis
You and your child will work with the prosthetist and physical therapy team to find the right prosthesis. The right choice depends on several factors:
- Leg length – Your child’s doctor decided where to operate based on where the cancer was. Which prosthesis works best for daily activities depends on the length of your child’s residual limb. Residual limb length can affect your child’s overall function.
- Size – Younger, smaller children will have fewer choices in prosthetic legs because they do not weigh as much and are not as strong as older children. Many prosthetic knees require some strength to work properly. If your child is small, a more advanced prosthesis might have to wait until your child is older and bigger due to the size or length of prosthetic components.
- Prosthetic knee – As your child gets stronger and walks better with the prosthesis, the prosthetist will give your child more advanced prosthetic knees. These will allow your child to walk more naturally. It can take time to learn how to use each knee correctly. More advanced knees will require more strength and more practice in PT and at home.
- Activities – A prosthetic leg is designed to let your child do regular activities. The prosthetist will recommend the best option for your child. Your child can also return to some activities, such as swimming and other sports, without a prosthesis.
Cost of prosthesis
St. Jude will help cover the cost of your child’s prosthetic limb. If you have medical insurance or other health care coverage, your carrier will be responsible for costs that are covered. St. Jude will pay costs not covered by your primary or secondary medical coverage for that prosthesis. St. Jude will pay for a prosthesis that can be worn daily and that allows for maximum possible movement and function.
St. Jude will cover the cost of only one prosthesis at a time and will not cover extra prostheses that you and your child may want. Insurance companies also will not cover the cost of multiple prostheses. St. Jude will pay for adjustments and needed components to your child’s prosthesis. As your child grows, if the prosthetic team decides that changes to the device or a replacement prosthesis is needed, St. Jude generally will pay for those changes and replacements. St. Jude will continue to pay for this prosthetic care until 10 years after diagnosis or until your child is 18 years old, whichever occurs later.
Long-term prosthesis care
Your child’s residual limb and prosthesis will need long-term care. The St. Jude physical therapy team can help coordinate CFI services on your return visits.
If you prefer care from a prosthetic company other than CFI, your St. Jude team can talk with them and help arrange services. However, St. Jude pays for prosthetic services only if they are provided by CFI at St. Jude or provided by a company that St. Jude has contracted with at one of our Affiliate locations. The cost of prosthetic services from other companies will not be covered by St. Jude, but you do have the right to choose a different company.
A new beginning
We know this is a challenging time for you and your family. It takes a lot of time and effort to become skilled at using a prosthesis. St. Jude Rehabilitation Services is here for you and will try to give your child the care, attention, and guidance needed to have a fulfilling life with the new prosthesis.
If you have questions, please call Rehabilitation Services at 901-595-2461 or talk to your child’s St. Jude doctor or nurse.
This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.
St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.
ATTENTION: If you speak another language, assistance services, free of charge, are available to you. Call 1-866-278-5833 (TTY: 1-901-595-1040).
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