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Sometimes in EDMD patients the Neurologist will recommend surgeries on certain contracture points to help to improve the quality of life of the patient.
Common places where they will focus the surgeries on is on the Achilles Tendon and the Elbow Contractures.
When the patient has contractures at the Achilles Tendon they will typically display behavior known as “toe-walking”. The patient will walk primarily on their toes and not on the entire base of the foot. This surgery can flatten out the walk enabling the patient to walk “normally”.
Another common site of contracture is in the elbows. When the patient has this type of contracture you will see the arms bent at the elbow and usually “locked” at a certain level of expansion. Meaning they will not be able to unbend their arms past a certain point. We have not heard of cases of surgeons willing to perform surgeries on these contractures at this time.
There are sever cases of contractures occurring at the neck and spine. There are no known cases of surgical repairs of these contractures and often the patients will experience physical discomfort and pain.