FAQ

LIMB LENGTHENING FAQ'S

DOES LIMB LENGTHENING HURT ?

  • Everyone has a different experience with regards to pain with limb lengthening.  In general, the first inch is relatively easy, and then it gets a little more challenging thereafter.  Keep in mind that not only is the bone lengthened, but the skin, blood vessels, nerves, and muscles.
  • Although to some, the lengthening process can be uncomfortable, your child should not be screaming in pain everyday.  If that is the case, please let your surgeon know so that steps can be taken to alleviate this pain.
  • There are many different strategies that are available to help with pain. Some are as simple as pain medication.  During the lengthening process, you may need an occasional pain pill.  Sometimes muscle relaxer pills are also helpful. Please do not take NSAIDs (such as Advil or Aleve) without first discussing with your doctor.  This medication can alter the healing process.
  • Sometimes, the pins in the external fixator can become infected during the lengthening process.  If it seems as if the pin itself is the most painful part of lengthening, please let your doctor know so that antibiotics can be prescribed.  It may also be helpful to wrap up your pins with rolled gauze.

HOW CAN A BONE BE LENGTHENED ?

  • In general, a bone can be lengthened by cutting it using a special technique, and then slowly stretching it everyday.  The average rate of lengthening is 1 millimeter (mm) per day.  The bone is stretched either by an internal fixator, or an external fixator. 
  • An internal fixator means that the device utilized to stretch the bone is implanted inside the body.  The most common way to lengthen the bone from the inside is with a magnetic lengthening nail. Not every person is a candidate for the nails.  Most important, your child must be fully grown before a device such as this can be used.
  • An external fixator is a device that is mounted to the outside of your child's limb.  There are large pins and sometimes skinny wires that go into the bone, and then the external fixator is attached to these metal pieces.   Some external fixators are monolateral and some are circular.  Monolateral external fixators are typically used on the side of the arm and sometimes on the side of the thigh (femur).  The circular external fixators are more commonly used for the leg (tibia) bone.  However, circular fixators can be placed on the arm, forearm, foot, and thigh as well.
  • If your child has a circular external fixator, and you need more information on how to adjust the Taylor Spatial Frame, click here.
  • Your surgeon can discuss these various surgical options with you and help determine which type of device is best suited for your child.

HOW MUCH CAN THE BONE BE LENGTHENED ?

  • There are many factors that go into answering this question.  It mostly depends on the underlying reason why the bone is to be lengthened in the first place.  A good rule of thumb is that one can lengthen 20% the current length of the bone relatively safely.  Therefore, if a bone measured 10 inches, it could safely be lengthened by 2 inches (5 centimeters).
  • In general, the longer the lengthening, the more risks are involved, please see below.

WHAT ARE THE RISKS ?

  • The decision to undergo a limb lengthening should not be taken lightly.  It is a large commitment for both your child, yourself as the parent, and for the surgeon.  The stronger the commitment and the communication lines, the more successful the surgery
  • There are many risks with limb lengthening.  The most severe one being a joint dislocation.  The knee and/or hip can dislocate during a lengthening procedure.  Those children with limb deficiencies such as congenital femoral deficiency are at much higher risk for something like this to happen.  Ways to prevent this from happening are weekly radiographs, intensive physical therapy to maintain range of motion, and caution not to "overlengthen".  Joint dislocations are rare, they can be treated, but it is best to avoid them in the first place.
  • The most common problem with lengthening is pin infections when using an external fixator.  These are typically very easy to treat with oral antibiotics.
  • Other risks can be discussed in the office with your surgeon

WHAT ARE THE BENFITS OF LIMB LENGTHENING ?

  • Two words: life changing
  • Those that undergo limb lengthening surgeries typically have pretty extreme problems leading to their decision to undergo surgery.  These surgeries can enable your child the ability to walk without a large shoe lift and/or prosthesis.  These surgeries can correct painful, crooked limbs too. In summary, the lengthening enables an increase in function for your child.

 

POST OP LIMB LENGTHENING/EX-FIX FAQ'S

HOW DO I PERFORM PIN CARE ?

  • Your surgeon will let you know once it is time to start cleaning the pins.  Typically, the surgical dressings stay in place for 1 week prior to cleaning. Please clean pins on a daily basis.  If you are not allowed to bathe (usually for the first two weeks after surgery), the clean pins with a solution of half saline and half hydrogen peroxide.  Take a sterile piece of gauze and soak it in the saline/peroxide solution and rub it in a similar manner to shining shoes, around each of the pins.  The skin often tries to adhere to the pins, and it is very important to push the skin back away from the pins.  Other times, there is a crust that can develop around the pin sites, and it is important while cleaning the pins to ensure all of this crust is cleaned away.  The hydrogen peroxide is helpful to prevent the crust from building up. An alternative to using sterile gauze to clean the pins is with a clean toothbrush dedicated solely for cleaning pins.
  • Once your child is allowed to get the external fixator frame wet, then pin care becomes much simpler.  Simply remove all dressings and allow your child to take a bath or shower.  Encourage the use of soap and water around the pin sites, and ensure at this time that there is no crust developing around the pins and that the skin is not adhering to the pins.  It is helpful if your child is taking a bath to place a small amount of bleach in the tub.  Still use a toothbrush in the bath or shower to scrub at the pin sites daily to keep them clean.
  • PIN INFECTIONS:  Unfortunately, pin infections are very common with prolonged use of the external fixator.  The best way to decrease the risk for infection is to clean the pins on a daily or twice daily basis with the methods described above.   Sometimes pins that are loose or under a lot of stress are at increased risk of infection.  If the pin is slightly loose, let your surgeon know right away.  In addition, take some rolled gauze, and wrap it snuggly around the loose pin and another pin to help keep it stable.  Once limb lengthening and/or deformity correction is completed, the risk of pin infections decreases as it is the movement of the pins that typically causes infection.  Signs of a pin site infection include: increased redness around the pin site, increased pain around the pin site, or new onset of drainage around the pin site.  If you notice any of the above symptoms in your child, please call or email your physician’s office to make him/her aware of the pin site infection and also to schedule an appointment as your physician would also like to evaluate the pin site. If your child is experiencing fevers greater than 100 degrees Fahrenheit (38 degrees Celsius), please call your physician’s office at once, as this may represent a more severe infection that may have to be dealt with more acutely in the hospital.

WHAT DO I DO WITH THE INCISIONS ?

  • Following your surgery, your surgical incision should remain covered for the entire week unless otherwise instructed by your surgeon.  When you return to the office the week following surgery, your surgeon or one of his/her assistants will remove the dressings at that time.    Once the original dressing is removed, the assistant will instruct you on how to clean the pins.
  • Most likely after the first week, your surgeon will allow your child to shower
  • Please do not put any creams or ointments on the surgical incisions unless instructed to do so.

BATHING

  • Under most circumstances, you should be seeing your surgeon approximately 1 week after surgery.  Your child should not take a bath or shower unless you see your doctor unless otherwise instructed to do so.  If the wounds are looking clean, your doctor will typically allow your child to take a shower at one week and a bath in 2 weeks.  Keep in mind that your child may not be able to put weight on the operative leg, so a shower unassisted could be difficult.
  • We may be able to order a shower seat, or an alternative is to place a plastic lawn chair in the shower for your child to sit on.

LIMB LENGTHENING/DEFORMITY CORRECTION

  • Prior to a lengthening surgery, you and your surgeon will determine a goal for the amount of length to be achieved.  This goal may change depending on how the lengthening process is going.  On average, the external fixator will stay on for one month for every centimeter of lengthening desired.  So, if the goal is to lengthen your child’s limb 5 cm (which is 2 inches), the external fixator stays on for 5 months.
  • During the lengthening process, your child will likely need to come for weekly doctor visits to check x-rays and ensure that the lengthening is going smoothly.  Also, you must go to physical therapy as directed.  Limb lengthenings are only successful if your child is able to continue to move his/her hip, knee, and ankle during the lengthening process.  Your doctor will stop lengthening if your child’s knee, hip, or ankle are becoming too stiff or if the joints are appearing to come out of place as this can lead to serious complications.
  • Your surgeon will give you very specific instructions on how to use your particular external fixator device at the first post-operative visit.  It is very very important not to go any faster or slower than what you are instructed to do.  This practice may be extremely dangerous.

PHYSICAL THERAPY

  • Your child should start physical therapy immediately upon discharge.  Arrangements for therapy after surgery will be arranged prior to surgery as often as possible; if you use a CHOA therapist, then the therapist will know exactly the protocol that she wants
  • If CHOA physical therapy is not conveniently located to you, then your surgeon's patient care coordinator will send your therapist a copy of the PT lengthening protocol.  Please have available to your surgeon a copy of your child’s range of motion of the hip, knee, and ankle joints at every visit.

OTHER QUESTIONS

  • There will certainly be other questions along the way, and communication is the key to success
  • Please feel free to contact us.
    • For absolute emergencies, please dial 911
    • To speak with the on-call physician after hours, please call our main number: 404-255-1933
    • For non-urgent matters, please contact your physician's patient care coordinator and/or call our main number.

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