Limb Lengthening and Reconstruction | What to Expect

What to Expect Before and After Limb lengthening, Limb Correction Surgery

Based on your child's assessment, their care team from the Limb Lengthening and Reconstruction Center will develop an individualized treatment plan and therapy program to optimize the function of their arm or leg. Following treatment, most patients have good mobility and can participate in typical daily activities, such as playing baseball, basketball and swimming.

Physical therapy is available at our Burnet Campus or at one of our eight conveniently located outpatient centers. If you live outside the greater Cincinnati area, our team will coordinate the therapy plan with your doctors.

Family education and therapeutic exercises are important parts of your treatment. We encourage family involvement during therapy sessions. You will receive the education and support needed to continue therapy at home as you care for your child.

The Corrective Process: External and Internal Options

Limb lengthening and limb correction are techniques that can help to correct irregular bone growth due to birth defects, diseases or injuries. The correction process can be used to replace missing bone and lengthen or straighten deformed bone segments.

The procedure begins by carefully cutting the bone during surgery. The bone that has been cut can be gradually distracted (pulled apart) over time, which leads to new bone formation at the site of the lengthening or correcting. The actual procedure usually requires just several days at the hospital.

The bone is then gradually lengthened at home and corrected over time using an external fixator or an internal lengthening device.

What is an External Fixator?

An external fixator is a device worn outside the body that is connected to the bone with pins. The pins pass through the skin to connect the device to the bone. The external fixator is used to support the bone while it is lengthened or corrected, and it helps the body to move normally while the bone is healing. After the bone has healed, the external fixator is removed in a second surgery. 

The fixator needs to remain in place until the bone appears fully formed. Your child’s physician will be able to tell when this has happened through X-rays. Without the fixator, the bone might collapse or re-shorten.

Living with the Fixator

A fixator should provide firm but comfortable control for as long as it is worn. During treatment, there may be some changes your child will need to make to her daily routine, but the fixator will not interfere too much with normal life. As soon as the fixator is no longer needed, it can be removed quickly and easily, often as an outpatient procedure.

Adjusting the Fixator

Soon after the operation, you will be shown how to adjust the length of your child’s fixator frame. You will need to do this several times a day. This lengthens the bone by just 1 millimeter a day, which is a comfortable rate for the new bone cells to grow. Muscles, nerves and blood vessels grow along with the bone in response to this slow stretch, just as they do during a growth spurt.

By taking regular X-ray or ultrasound pictures of your child’s bones, the doctor will make sure that the lengthening isn’t happening too quickly or too slowly. Your child’s doctor may ask you to adjust the rate of lengthening as a result of the X-rays.

Even when the limb reaches the right length, your child will still wear the fixator while the bone grows strong. Your child may need to wear a plaster cast for a short time after the fixator has been removed.

Keeping the Pin Sites Clean After Surgery 

Your child may not be allowed to shower for approximately five to seven days after the external fixation device is attached to the limb. If your child has an incision, they may not be able to shower until the stitches or staples are removed.

During the first few days after attachment, expect clear yellow or slightly bloody drainage from the pin sites. To remove this drainage, soak a cotton swab in normal saline. Rub the cotton swab on the pin site and move outward, using a circular motion. Each cotton swab should be used only once and then thrown away. Cotton swabs also may be used to remove dried blood and scabs from the pin sites and help keep the skin from sticking to the pins. Be careful not to irritate the skin. Excessive skin motion on the pin may cause infection.

Back at Home: Proper Pin Care 

A major responsibility that you perform once you are home is making sure the pin sites are cleaned every day.

Step 1: Wash your hands thoroughly. Prepare the things you need for cleaning the pin sites, which consist of:

  • A cleaning solution made of one-half peroxide and one-half saline.
  • A disposable cup to hold the cleaning solution.
  • Cotton swabs.
  • A bag for getting rid of all waste material.

Step 2: Gently massage the skin around each pin with the tips of your fingers, to make sure that the skin around the pin site is free to move slightly. This helps bring any drainage to the surface of the skin where it can be cleaned away, reducing the risk of infection.

Step 3: Dip your cotton swab briefly in the cleaning solution. Clean in a circular motion all around the first pin site, making sure to remove any crusting. Use a new cotton swab until the site is completely clean. Dry the pin site with a dry cotton swab. Repeat this process for every pin site, using a clean cotton swab for every pin. It is important to use a different cotton swab for each pin site because this helps to reduce the chance of spreading an infection from one pin site to another.

Showering / Swimming

When showering, clean the pin sites with an antibacterial soap and water. As long as there are no open wounds your child can shower with the external fixator in place. Wash the external fixator as well as the limb in the shower using antibacterial soap, and allow the soap and water to run down the limb. Do not scrub.

Rinse and dry the fixator and the limb thoroughly. (Use a hair dryer on cool setting.) For your child’s safety, consider placing a rubber mat in the tub, using a shower chair and installing handrails in the shower.

Any activities that involve soaking the external fixator in potentially contaminated water are discouraged. Your child may be allowed to swim in a clean, chlorinated pool, but should avoid natural ocean waters, rivers and lakes.

Warning Signs

It is important for you and your child to know the signs and symptoms of complications so that they can be diagnosed and treated early.

Painful Pin Sites

Pin site infections do not occur immediately after surgery, but may occur once the patient is home. If any of the pin sites become painful, swollen or red, or if you notice an unusual amount of discharge, try cleaning the affected area more often and contact your child’s doctor for advice. If there is no improvement after two days, or if the discharge becomes thick or colored, you should contact the Limb Reconstruction Center at Cincinnati Children’s.

A swab of the drainage may be taken to identify the infection, and your child may be prescribed an antibiotic. The tenderness and drainage often improve within 24 to 48 hours of taking the antibiotic.

Nerve Problems

The first sign of a nerve problem is called referred pain. This is pain in the foot or hand that occurs during the lengthening phase (when the fixator is adjusted to slowly stretch the bone). The pain is often in the top of the foot or hand, or in a location where there are no pin sites.

Another sign of a nerve problem is increased or decreased feeling in the area of the foot or hand. Report either of these signs to your child’s physician as soon as possible. It may be a symptom of nerve irritation.

Clothing and Footwear

Choosing the right clothing can help hide the fixator, provide a protective shield to help prevent dust and dirt from invading the pin sites, and keep your child comfortable in all kinds of weather.

  • Snap-on nylon sports pants or shorts may be the most comfortable articles of clothing to wear.
  • Pants can be altered to help fit over the fixator by cutting the inside and/or outside seams up to the crotch and inserting pieces of fabric.
  • During the summer months, consider wearing shorts or pants with the pant leg cut off above the external fixator.
  • For females, loose-fitting dresses or skirts are preferable.
  • Underwear must have a wide leg diameter and be very stretchy. They can be split in the seam, and snaps or hooks and loops can be added.
  • When it comes to shoes, sneakers are recommended. If the external fixation device covers a part of the foot, you will need to modify your child's shoes.
  • If the fixator covers the foot area, a foot ring with a rubber sole can be worn instead of a shoe.

What is an Intramedullary Lengthening Device?

Intramedullary lengthening devices are inserted into the bone at the time of surgery and gradually lengthen over time.  A magnet activates lengthening of the rod which then lengthens the bone. After the bone completes the lengthening process, the internal lengthening device will remain in place until the new bone completely heals. A second surgery is typically performed to remove the internal lengthening device after the bone heals.

Warning Signs

It is important for you and your child to know the signs and symptoms of complications so that they can be diagnosed and treated early.

Infection

Surgical site infections usually do not occur immediately after surgery, but may occur once the patient is home. If any of the surgical sites become increasingly painful, swollen or red, or if you notice an unusual amount of drainage or discharge, please contact your child’s doctor for advice. 

Nerve Problems

The first sign of a nerve problem is called referred pain. This is pain in the foot or hand that occurs during the lengthening phase (when the intramedullary lengthening device is adjusted to slowly stretch the bone). The pain is often in the top of the foot or hand, or in a location below the area of surgery and lengthening.

Another sign of a nerve problem is increased or decreased feeling in an area of the foot or hand. Report either of these signs to your child’s physician as soon as possible. It may be a symptom of nerve irritation.

Follow up and Post-Operative Care

Weekly visits may be required following the procedure. These visits are necessary to avoid complications that would otherwise slow down the treatment and healing process. Success with this treatment, as well as the amount of time a patient needs to wear the fixator or internal lengthening device, varies greatly. Your child’s doctor will advise you on what to expect.

Getting Around After Surgery

Before your child is discharged from the hospital, you will receive information about weight bearing (how much weight can be put on the operated limb) and mobility (movement or getting around).

Physical therapy

Physical therapy may start the day after your child’s operation. Therapeutic exercises are important to make sure that the bone is surrounded and supported by healthy muscles, and to ensure that joints function well. Your child’s surgeon, nurses and physical therapists will plan an individual program of care with you, and the therapy will be adjusted as your child progresses through treatment.

Standing and Walking

Within a few days of a leg lengthening and correction procedure, your child may be able to stand and begin to walk with the help of crutches. At first, he or she will be allowed only to put some weight on the operated leg.

A wheelchair or crutches may be required when you go home, depending on the treatment. A physical therapist will teach your child how to use these aids and advise how to get around at home during this time. As the leg continues to heal, your child will become more able to bear full weight on the leg.

Safety Tips

Encourage your child to follow these safety tips:

  • Use crutches that have large rubber suction tips at the bottom.
  • Good balance and posture are important when using crutches to help walk.
  • Wear shoes with firm soles to prevent falls.
  • Stay away from wet, slippery surfaces, freshly waxed floors and rough, uneven surfaces.
  • Make sure someone is by your side when going up and down steps until strength and mobility are regained.
  • When using stairs, put weight on the good leg first, and then follow with the affected leg when going up stairs.
  • When going down stairs, put weight on the operative leg first.

Coping With Pain

It is important that your child be honest about their level of pain during treatment. For the first few days after the operation, your child will be in the hospital and their pain will be managed by pain experts.

Pain Medication

When your child returns home, their pain will be controlled by an over-the-counter pain medication, like acetaminophen, or in some cases, stronger medication.

Avoid using over-the-counter anti-inflammatory medicine for pain control (such as Motrin or Aleve). Inflammation (a reaction of tissue to irritation that can include pain, redness and swelling) is necessary for bone formation; these drugs reduce inflammation and as a result slow down the bone's healing process. Pain medicine should be taken before therapy and at bedtime, as needed. If your child has pain, it should decrease over time.

Other Ways to Alleviate Pain

Things you can do as the parent to help your child reduce their pain:

  • Make sure your child does the exercises. Do not allow the knee or ankle to become stiff.
  • Keep the pin sites clean.
  • Elevate the affected limb while your child is at rest. Keep the limb straight in a secure position to decrease pain and swelling.
  • Have your child take pain medication at least 30 minutes before exercise so that the limb can move with less discomfort.
  • Have your child practice relaxation, distraction and imagery techniques to help keep calm and to help relax muscles. (Ask your child's doctor to explain some of these techniques to you.)
  • Contact the doctor right away if pain, discomfort or swelling increases and does not get better by resting.
  • If the doctor prescribes an antibiotic to fight a pin site infection, your child should take the medicine at the recommended dose until it is finished. Don't forget to continue cleaning the pin sites while you are taking the medicine.