Ehlers-Danlos syndrome (EDS) is the name given to a group of disorders that affects connective tissue and cartilage. The connective tissue supports the structure of skin, joints, and other tissues.
No cure is available for EDS but treatments can help manage the disease.
Surgery is sometimes performed to fix joint problems or treat fractures. Patients may also undergo operations of the soft tissues, but these surgeries usually only offer short-term relief, because soft tissues will stretch again over time. Soft tissue and bone surgery can sometimes be combined.
Surgery comes with the risk of complications and is recommended as a last resort for EDS patients. Common complications include excessive bleeding, problems with wound healing, and tears in blood vessels. Several precautions to take before, during, and after surgery are summarized below:
The patient should consult with their surgeon and other medical professionals before any operation, and undergo assessments to determine possible heart, lung, and bleeding problems. Lung problems increase the risk of lung collapse. In the case of a mitral valve prolapse (a floppy heart valve), antibiotics may be required to reduce the risk of infection. Pain medication should also be discussed, and can be chosen based on what worked well for the patient in the past.
Intramuscular injections should be avoided because they can cause excessive bruising. Surgical assistants have to be careful not to cause injury or dislocation of the joints when elevating the patient’s limbs. Because the patient’s skin and soft tissues are very sensitive, the surgeon should be very careful and avoid unnecessary retractions (pulling back of tissue) to limit injuries. It is recommended that the surgeon close wounds with subcuticular stitches and use adhesive dressings, which should remain on longer than usual to improve the healing process.
Rehabilitation after surgery has to be tailored to the patient’s situation and developed together with a physical therapist.
Last updated: Oct. 17, 2019
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