Treatment for melorheostosis can be nonoperative or operative. In children, nonoperative techniques include bracing and serial casting. These methods are typically ineffective at preventing progression of the deformity. Physical therapy may also be recommended to address joint contractures and increase joint mobility. Various medications may also be recommended for pain management.
Surgical treatment for melorheostosis can take on a variety of forms, and may include:
- Contracture releases
- Tendon lengthening
- Limb lengthening
- Joint fusion / growth plate arrest
- Gradual distraction
Soft tissue procedures (i.e. contracture releases, tendon lengthening) are typically unsuccessful and result in recurrence of deformity. This is because the underlying deformity of the bone has not been addressed. Osteotomy treatment also has a relatively high failure rate and often results in joint stiffness and non-union. Realignment may improve appearance but not function. There are limited reports of successful joint fusion for treatment of melorheostosis. Amputation is an extreme treatment option and should only be considered in the most severe cases.
The take home point is that while there are many operative techniques recommended for melorheostosis, many of them fail to address the deformity. At the Paley Institute we recommend gradual distraction with an external fixator. Limb lengthening can also be performed in conjunction with the distraction. This is the safest and best treatment for melorheostosis.
In gradual distraction an external fixator is applied and the affected bone is broken (osteotomy). The external fixator will gradually pull the two bone ends apart at a very slow rate (1 mm per day) and new bone will form in the gap. This technique comprehensively addresses the deformities of melorheostosis. Gradual distraction will slowly correct the joint contractures. Physical therapy during distraction is crucial to ensure that the soft tissues lengthen along with the bone. The new bone formed during distraction is half normal, half abnormal. This helps correct the bony deformity by adding additional normal bone to the affected joint. As new bone is formed in the distraction, this will result in increased bone length, eliminating any limb length discrepancy.