Surgical Treatments and Management in FSHD
One of the most common and problematic symptoms of FSHD is scapular “winging,” which is caused by weakness in the scapular stabilizer muscles that hold the scapula (shoulder blade) in place. In some patients this can result in significant loss of ability to raise the arm above the shoulder and, consequently, major functional impairment in critical daily activities such as eating, drinking, lifting and reaching.
Scapular fixation is a surgical procedure that stabilizes the scapula by attaching it to the rib cage to prevent it from “winging.” This procedure comes in more than one variety. One method is the scapular fusion, in which a piece of bone is taken from the patient, typically from the pelvic bone, and used to fuse his shoulder blade to the rib cage. Another method involves using screws or wires, rather than a bone graft, to hold the scapula in place. Scapular fixation typically involves general anesthesia and requires the patient to be in a cast after the surgery. The universe of potential candidates for scapular fixation is small, including some people with FSHD and a limited number of other conditions. The procedure is extremely specialized, few are performed each year compared to most orthopedic procedures, and there are very few orthopedic surgeons with significant experience.
The decision to consider this surgery is very complex and highly individualized. Some FSHD patients who have had it have experienced significantly improved shoulder function. Like all elective surgeries, however, trade-offs are involved. Things to consider include the risks typically associated with surgery and anesthesia in general, the possible reduction of the patient’s ability to move his arm behind his back, the effect of reduced mobility and prolonged inactivity during the recuperation period, and the demands of rehabilitation both while the cast is on and after it has been removed.
Patients who have had this procedure recommend only considering a surgeon with significant experience in performing the procedure; discussing in great depth with the surgeon one’s lifestyle, work and family demands, and physical abilities and limitations; coordinating closely with one’s neurologist; and speaking with FSHD patients who have had the procedure. If the decision is made to have the procedure, the rehabilitation program requires careful planning with the surgeon and with physical and occupational therapists with relevant experience, and the patient must be rigorous and diligent in doing the rehabilitation.
For more information about scapular fixation, click HERE to download a brochure about Physical Therapy and FSHD written by Wendy M. King, P. T., and Shree Pandya, P.T., M.S. and published by the FSH Society. The brochure includes information about scapular fixation.
For general information about orthopedic surgery, see the websites of:
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Links to recent articles about scapulothoracic fusion in FSHD
2010 FSH Society International Patient and Researcher Network Meeting
J Bone Joint Surg Am. 2005 Oct;87(10):2267-75.
Cochrane Database Syst Rev. 2003;(3):CD003278.
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For a discussion of surgery, anesthesia and FSHD, see Health Information About FSHD - Anesthesia
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The information on this website is provided for general informational and educational purposes only. The FSH Society and this website do not provide medical advice or recommendations. Licensed physicians and other medical professionals who are familiar with an individual’s specific health situation should be consulted for diagnosis and treatment of Facioscapulohumeral Muscular Dystrophy and any other medical conditions. Neither the FSH Society nor any contributor to this website can be liable or responsible for any result derived from the use of this material.
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