Limb Lengthening FAQ
Q. How are limb length discrepancies treated?
A. Doctors at Texas Scottish Rite Hospital for Children developed the TRUE/LOK™ External Fixation System, a modification of the Ilizarov frame, to treat patients with a variety of limb length discrepancies. Advancements in treatment continue to be made through TSRHC's Center for Excellence in Limb Lengthening and Reconstruction.
Q. What type of device will be used to lengthen my limb?
A. Doctors at TSRHC use the TRUE/LOK™ External Fixation System, which is made up of two or more rings attached to your limb. After the rings are connected, the doctor separates the bone. Special rods that are designed to be lengthened are then attached to the rings. After surgery, the doctor will show you how to turn the rods to gradually lengthen the bone. This is repeated until the desired length is reached. Because our bodies are programmed to automatically heal broken bone, the gap in the bone created by the lengthening slowly fills in as you turn the frame to lengthen the limb. The frame is worn until the bone is healed.
Q. Will my muscles and skin grow with the bone?
A. Because the bone is lengthened gradually, your muscles, skin, nerves and blood vessels have time to grow along with the bone.
Q. Will it hurt?
A. You will be under anesthesia when the doctor attaches the TRUE/LOK™, so you won't feel pain during the surgery. Wearing the frame can be uncomfortable. You may experience some soreness as you turn the rods and the bone lengthens. Your doctor will give you medicine to help manage the pain, and our psychologists can teach you ways to deal with the discomfort.
Q. How long will I wear the frame?
A. The TRUE/LOK™ is usually worn for six to nine months. The exact length of time depends on how much lengthening is needed. The bone is lengthened during the first few months of wearing the frame, and the rest of the time is spent allowing the bone to heal.
Q. How often must I turn the rods?
A. During the lengthening process, the rods are usually turned four times a day, which lengthens the bone by about one millimeter per day. Your doctor and nurse will give you more specific instructions on how to turn your rods and when to begin the process.
Q. Can I go to school while I'm wearing an Ilizarov?
A. Yes. Your doctor will tell you when you may return to school.
Q. What kind of clothes can I wear?
A. Shorts, skirts or loose pants, such as sweatpants or windpants, fit comfortably over the frame. An option for other types of pants is to have one pant leg expanded at the seam and attached together with Velcro.
Q. Can I still participate in athletic activities?
A. Yes, you can still participate in most athletic activities, although wearing the frame will restrict your movement. TSRHC's physical therapists and therapeutic recreation specialists will help you continue to do as many of your favorite activities as possible. Swimming is a good way to stay fit without putting too much strain on the limb, but remember to swim only in chlorinated or salinated pools. Do not swim in lakes or ponds.
Q. How often will I need to visit the hospital?
A. Typically, you will need to visit the hospital once every two weeks while you're turning the rods. After the bone is lengthened, appointments are only scheduled once per month until the frame is removed.