A lot of people with Charcot-Marie-Tooth (CMT) disease have surgery to correct foot deformities, a British study reports.
Another important finding was that an operation requires a number of individual surgical procedures but few surgeons use the same pattern of procedures for the same type of operation.
The study, “Prevalence and orthopedic management of foot and ankle deformities in Charcot-Marie-Tooth disease,” was published in the journal Muscle & Nerve.
CMT is characterized by weakness, wasting and sensory loss in limbs. This means that foot deformities, such as forefoot cavus, clawtoes, hindfoot varus, and ankle instability, are often part of the disease.
Doctors refer patients with foot deformities to orthopedic surgeons after other options have failed. Those options include physical therapy, braces and other devices to help with foot function.
A surgeon must improve both the bone and muscle part of a deformity to provide a patient with a functioning foot. Because each patient’s deformity is different, each operation must be individualized.
Unfortunately, researchers have done few studies on the long-term consequences of the various types of foot deformity surgeries that doctors performed on CMT patients.
University College London researchers wanted to know how many CMT patients have foot deformities and how many opt for surgery. They also wanted to know what kinds of surgical approaches doctors took, to see if there were any patterns.
They started by checking for foot deformities in CMT patients who were being treated at Inherited Neuropathies Consortium centers. They wanted to know how many had a deformity, what type it was, whether they used any orthopedic aids and, if they had foot surgery, what kind it was.
Seventy-one percent of the CMT patients in the registry had a foot deformity, and 30 percent chose to correct it with surgery, the researchers found.
They then surveyed orthopedic surgeons at Inherited Neuropathies Consortium centers to see what types of surgeries they had performed to correct CMT patients’ foot deformities.
The survey showed significant variation in the types of procedures that the surgeons performed. In fact, each surgery was composed of a number of individual procedures, which varied from patient to patient.
Surgeons said they performed a median of five procedures when correcting a child’s deformity and six with adults. Only two of the 16 surgeons who answered the survey listed the same combination of procedures for a hypothetical children’s deformity. In a hypothetical adult case, none of the combinations that the surgeons listed matched.
Researchers suggested that it might be helpful to develop foot surgery guidelines that include the types of procedures that are most beneficial to patients.