Limb lengthening surgery

     Amaya's lengthening surgery is one month away. Here's some information on her upcoming surgery. Limb lengthening is a four part process. It works by gradually growing new bone and soft tissues (skin, muscle, nerves, blood vessels, etc.). This is called tissue regeneration. Bones are a living substance and when the ends are pulled apart new bone grows in between. It is sometimes referred to as a four month surgery because the process of lengthening takes about four months.
Here are the four parts-

1. Surgery- This is when Dr. Nelson will break her bone (usually in two places) and attach an external fixator. She should be in the hospital about three days. In addition to that he will also correct her hip (the muscles and tendons in her hip) and realign her femur.

2. Distraction Phase- This is the phase where the bones are pulled apart. This begins a few days post surgery (this allows any inflammation in the bone to go down). Josh and I will have to do several manual turns on her fixator each day (they will give us a tool). The rate of growth is 1mm per day and the preferred rate of turns is four times a day. This may be adjusted (slower or faster) depending on how Amaya's  bone and soft tissues are tolerating the growth. During the day we can expect Amaya to have little pain and at night more aches and some difficulty sleeping (each patient responds differently, so we'll have to see how she does). Physical therapy is key during this phase because it helps stretch the muscles to help them grow and help maintain joint flexibility. Amaya will have hour long physical therapy sessions every day (Monday thru Friday we will take her to the physical therapy office and on the weekends we will do the exercises with her at home). During this phase weight bearing is allowed partially or completely, as tolerated. She might use a wheelchair or walker when she's tired. Amaya will go in every two weeks for x-rays and be evaluated (they will check her bone growth, nerve and muscle function, pin sites and monitor and prevent complications). 

3. Consolidation Phase- At this point lengthening stops and the bone is very weak. During this phase the fixator remains on (usually one month per cm of bone growth gained; were hoping Amaya will gain eight cm, so that means a possible eight months for the bone to heal) to help stabilize and give support to her leg. During the distraction and consolidation phases we have to do daily pin site cleaning to prevent infections. Pin sites are the sites where the pins enter Amaya's skin (there are usually about ten pins). Pin site cleaning is usually quite painful.

4. Removal of fixator- This is usually an outpatient surgery. Sometimes a cast is put on for added protection (usually for an additional month).

     I got this information from Dr. Paley's websites.  If you want to read more about the limb lengthening procedure, any other procedures, or PFFD you can visit Dr. Paley's sites at www.limblengtheningdoc.org or www.paleyinstitute.org  If you haven't visited his sites yet, I highly recommend it, especially if you're a parent or a patient. He has several videos and articles about lengthening and PFFD on his sites.