Extended Limb Lengthening
Little People of America Medical Advisory Board
Position Summary, 2006

The following position summary is not intended to either advocate for or condemn extended limb lengthening. It is meant to be a measured summary of information that may be of value to members of the small stature community and members of Little People of America.

The techniques for leg lengthening were originally developed for correction of limb length discrepancy and are an accepted therapy for this. Over the past two decades the procedure has been expanded to allow for symmetric lengthening in individuals of short stature. Although this newer application has generated widespread interest, it has also created controversy among both medical professions, and persons of short stature and their families.

There are no established medical indications for symmetric extended limb lengthening (ELL). While it may have benefit in preventing certain orthopedic and neurological complications in some skeletal dysplasias, the procedure is primarily being performed for adaptive, cosmetic, and psychosocial reasons.

Research is being done on the safety and long-term functional outcome of this procedure. Currently no prospective, randomized studies have yet been completed.

The possible complications of ELL are numerous, These include:

• Nerve injury (usually temporary);
• Infection;
• Angulation;
• Non-union;
• Increased contractures (of the hip, knee and/or ankle);
• Fractures;
• Unequal limb lengths;
• Increased risk for late onset osteoarthritis.
  

Although the acute complication rate associated with ELL has been reduced, it is still substantial.
This is what patients should have prior to initiation of ELL:

• Confirmation of a specific short-stature diagnosis. The relative risks and benefits of ELL are different in different types of skeletal dysplasias.
• Counseling concerning the natural history and genetic implications of the relevant skeletal dysplasia, independent of ELL.
• Adequate discussion of the benefits and risks of ELL (including medical complications, financial issues, educational and psychological concerns).

Prospective patients should be of an age to participate fully in these discussions and in the decision-making process.

We recommend that before, during and after ELL operative procedures, evaluation should include:

• Orthopedic assessment;
• Physical therapy assessment, including evaluation of mobility, activity, functional limitations, etc.;
• Clinical neurological evaluation;
• Peripheral vascular assessment;
• Psychological evaluation, including self-image, body image, peer relationships, and family relationships.
  

All of these evaluations will require the cooperative involvement of orthopedic surgeons, physical and occupational therapists, medical geneticists, radiologists, psychologists and/or psychiatrists, and social workers in longitudinal management. We caution prospective patients and their families to seek out institutions that offer the broad multidisciplinary approach that is needed. An institution should have a program with special emphasis and expertise in skeletal dysplasia. The institution should be equipped to follow the patient for a decade or more.

Complete success of ELL is not guaranteed. Furthermore, ELL will not change other health related needs of individuals of short stature. They will still need to have ongoing care by someone knowledgeable about the natural history of their specific diagnosis.

ELL is a complex procedure with far-reaching implications. Interested individuals should carefully assess the institution and personnel, as well as all risks and benefits of ELL prior to committing to this procedure.

Approved by the LPA Medical Advisory Board and LPA Board of Directors July 2006. 

© Little People of America
All Rights Reserved