Watchful Waiting for Marfan Syndrome

If you have mild symptoms of Marfan syndrome, your NYU Langone doctor may recommend watchful waiting, in which he or she monitors you for any changes in your condition. Symptoms such as a mild curvature of the spine, or scoliosis, and overcrowded teeth may not warrant immediate medical or surgical treatment. 

Marfan syndrome–related heart problems don’t necessarily need to be operated on right away. Using diagnostic imaging tests, including CT scans or echocardiograms, doctors can check for the presence of complications such as an aortic aneurysm, a bulge in your aorta. If an aortic aneurysm is less than 5 or 6 centimeters wide, depending on its location on the aorta, your cardiovascular surgeon may delay surgery to correct it.

If the doctor decides to delay surgery or other treatment, he or she may scan your aorta for any changes every three months to a year. If the bulge in the aorta reaches 5 centimeters in width, your doctor may recommend surgery. This is because a significantly enlarged aorta is at risk for tearing—known as aortic dissection—or bulging and, possibly, rupturing. 

Because aortic aneurysm and aortic dissection can be life threatening, it’s important to report any unexplained back, chest, or abdominal pain to your doctor immediately or go to the nearest emergency room.

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