Leg lengthening can be a very painful, very long, process with multiple surgeries and complications.
Reports of complications and pin infections seem to be quite varied. For example, The Gillette Childrens's Hospital published getting complications down to 25% with a 5% incidence in pin infections. [Dahl, 1996] On the other hand, Rose in 2004 quotes Paley and Takakura in saying
Because of the high incidence of pin tract inflammation, some authors do not regard it as a complication, but as a natural sequela of lengthening by callus distraction[Rose, 2004]
At the Maryland Center for Limb Lengthening, they reported a "70% complication rate with 50% of cases requiring additional surgery to treat complications", also reporting that most complications required agressive responses needed to prevent "permanent sequelae [results] that would worsen the functional result" [Paley]
( The article doesn't specify what the permanent results are - however in other articles and news reports, examples have been given where permanent nerve damage resulted causing the previously walking patient to lose limb functionality and thus being wheelchair bound. )
The maximum lengthening should not exceed 8-12cm in older children and 4-6cm in younger children [Paley]. The presence of a stable hip, knee, and foot are also very important. Before lengthening can begin, it is important to first stabilize the hip joint. Without this, they are at increased risk for dislocation of the hip joint during lengthening.[Sinai Hospital Case Examples]
In the 1960s and 1970s leg lengthening was thought to be a very bad idea. Drs. Westin and Guderson wrote in the "leg lengthening has been attempted with little real success". Dr Krajbich wrote "With newer methods it may be possible that in the future some of these patients may benefit from leg-length equaling procedures. At this stage, however, it would be very much an experimental undertaking." Drs. Westin and Gunderson wrote "Leg lengthening has been attempted in nine cases with little success and frequent complications.
One of the criteria for for consideration of femoral lengthening is the presence of of a stable hip and knee rarely found in PFFD." Keep in mind that all these articles were written in the 60's or 70's.
On the brighter side, information at The Alfred I. DuPont Institute indicates that lengthening is possible if the following criteria are met:
The patient will require one or more femoral lengthening and/or contralateral epiphysiodesis (slowing growth in other leg).[Abdel-Mota'al] However, they warn that "parents should understand the magnitude of the operative procedures for length equalization, the potential risk, including amputation at less desirable level, and the lengthened extremity will still not be normal." [Abdel-Mota'al]
When to have lengthening: Our orthopaedic surgeons said that in the US doctors do not want to operate on children before their brain has developed and is ready for surgery and the subsequent months of rehabilitation (e.g. not until they are mentally ready). This seems to be either between the ages of 2 and 4 or older than 7 years old. Dr. Paley wrote ...
...children between the ages of 4.5 and 6 or 7 years often
are not prepared psychologically to deal with limb lengthening. Their cognitive level is insufficient to understand why their parents allowed someone to do this to them despite that they are beginning to be more independent and may appear to be mature enough to handle the process. The younger children do much better because their cognitive level accepts everything their parents decide without questioning it.
Lengthening after the age of fourteen is not effective when the difference is large. kiev.ua
Here are some sites which advertise lengthening services: (Note: these are NOT endoresements - just a list of sites that we have found on the Internet)
Note from Mike 11/14/98 - I just received an e-mail from the mother of an 11 year old
girl that has had good success with Dr. Paley with a very long lengthening. She writes
"Her foot on her right leg came to her knee of the left leg when she was born. She is now only 6 inches off the ground. At birth, she was estimated to be 22 inches at maturity difference." Perhaps those newer methods that Dr Krajbich referred to are finally here and lengthening is now an option for more and more patients. For the complete story about Rebeccah's progress, please see [[Rebeccah's Story]]