Limb lengthening and reconstruction: Your child's patient journey

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​Discover the phases of your child's limb lengthening and reconstruction treatment.

Key points

  • Your child's patient journey starts with a discussion of treatment options with your child's team and a decision about surgery.
  • After surgery, there will be a short period of latency to allow your child to rest before the fixator is adjusted. From then on, the fixator will be adjusted every day.
  • Once the limb is lengthened or corrected, your child will continue to have regular check-ups and wear the fixator while their bone heals and strengthens. 
  • Once the fixator is off, your child will be guided back to normal activities and return to the clinic every three to six months until their limbs return to full function.

Limb lengthening and reconstruction is a complex treatment for limb deformities and differences in limb length. Surgery is only the first major step in your child’s treatment.

Below, you can read an overview of the various points on your child's journey before and, especially, after surgery.

What happens before limb lengthening and reconstruction surgery?

Referral

If your family doctor thinks that your child could benefit from limb lengthening or reconstruction surgery, they will refer you to an orthopaedic surgeon who specializes in limb lengthening and reconstruction.

First clinic appointment

When you take your child to the limb reconstruction clinic for the first time, you will need to register at the orthopaedic (bone) clinic. Once registered, your child will first go for X-rays and then return to clinic to meet the surgeon.

The surgeon will discuss your child's condition, examine your child and explain the treatment options to you. These may include an external fixator such as a Taylor Spatial Frame, a monolateral rail or a motorized intramedullary nail. You and your child will have time to go home and consider on your own which treatment option is right for you.

Education session

After your first clinic visit, you will return to the hospital for an education session with a physical therapy practitioner to help you and your child learn about the surgery. The practitioner will talk to you about what to expect before, during and after surgery, including what life will be like with a fixator on your child's limb. It is a good idea to make a note of any questions you would like to ask at this session so that you can have an open discussion about the surgery and treatment plan.

Follow-up appointment

After having time to think about limb reconstruction surgery on your own, you and your child will return to the hospital for a follow-up appointment. This time, you will meet with the surgeon again to choose the treatment option that is best for your child. If you choose surgery, the next step will be to book a date for the operation.

What happens during limb lengthening and reconstruction surgery? 

Limb lengthening and reconstruction surgery usually takes three or four hours. During the surgery, the surgeon will divide the bone. They will also place the external or internal fixator on your child's limb to lengthen or straighten the bone gradually over the following weeks and months.

Once the surgery is done, the surgeon will tell you how it went and you will be able to visit your child in the recovery room. Your child will stay in hospital for three to five days afterwards.

What can I expect after limb reconstruction surgery?

Limb reconstruction is divided into three important stages: latency, correction and consolidation.

  • Latency is an initial rest period to allow the limb to get ready for the correction.
  • Correction is the time when the limb is gradually moved or lengthened into its new position.
  • Consolidation is the time spent in the fixator when the bone heals and sets hard.

Latency

Latency means "delay". During this "delay", your child will rest so that the special cells that grow new bone can move to where the bone was divided. This part of treatment starts right after surgery and usually lasts five to seven days, until your child's fixator is adjusted for the first time.

Your child will be in the hospital for at least part of this phase of treatment and may need to use a walker, crutches or a wheelchair after surgery. The mobility aid they use depends on their age, comfort level and the amount of weight the surgeon allows them to put on their limb. Most children can put their full weight on the operated limb in the first few days after surgery.

Limb correction or lengthening

Limb correction occurs when the external or internal fixator is adjusted to straighten the limb. Limb lengthening occurs when the fixator is adjusted to make the bone (and limb) longer. Both of these processes may occur at the same time if necessary.

Your child's bone(s) will typically be moved one millimeter a day. As a result, this stage can last from two weeks to three months, depending on how much your child's bones need to be corrected or lengthened.

You (or your child) will be responsible for adjusting the fixator every day. The physical therapist practitioner will teach you how to do this before your child leaves the hospital.

You and your child will return to the orthopaedic clinic once a week during the limb correction or lengthening phase to review progress with the surgeon or physical therapy practitioner. You will also meet with a physiotherapist at the hospital to review your child's exercises. At each clinic visit, your child will go for X-rays so the surgeon can assess how well the limb correction or lengthening is going.

Consolidation

Consolidation is the phase during which your child's bone(s) will start to heal and strengthen. This part of treatment starts once the correction or lengthening phase is complete. It usually lasts several months and is often twice as long as the correction or lengthening phase of treatment.

Your child will continue to wear the fixator during this phase. On average, a child will need the device for about one month for every centimeter of lengthening or correction. For example, if the limb is lengthened 5 centimeters, your child will need the device for about five months.

You will return to clinic once a month during consolidation so the surgeon can check how the bone is healing and the physiotherapist can review your child's exercises. Your child will have X-rays at each visit.

Once the bone heals fully, your child will have another surgery to remove the fixator. If your child has an external fixator, they may need a cast for up to four weeks after it is removed.

What happens when the fixator is removed?

When the fixator is removed, your child is at the 'return to function' stage of their patient journey. At this point, your child should be able to bear full weight on their operated limb. If they are not yet comfortable walking on their own, they may want to use crutches or a walker for a few weeks.

Once the fixator is off, your child will be guided back to their normal activities. A gradual return to activity is encouraged. To protect the newly formed bone from breaking or bending, your child should avoid contact sports for one year after the device is removed.

Your child will return to the clinic every three to six months until their limbs fully recover their function.

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Dernières mises à jour: août 31st 2015