Watchful Waiting for Marfan Syndrome

If you have mild physical signs or symptoms of Marfan syndrome, your doctor may recommend watchful waiting, meaning they monitor you for any changes in your condition. Symptoms such as a mild curvature of the spine, known as scoliosis, or overcrowded teeth may not warrant immediate medical or surgical treatment.

Marfan syndrome–related heart conditions, including aortic root aneurysm, which is a bulge in the aorta, and aortic dissection, which is a tear in the aorta, don’t necessarily need to be operated on right away in all patients. Using diagnostic imaging tests, including CT scans or echocardiograms, doctors can monitor an aortic aneurysm. If the aortic root dilation is less than 4.5 centimeters—about 1.75 inches—wide, your cardiovascular surgeon may delay surgery and monitor you to see if the aneurysm stays the same size or enlarges over time. Your doctor may scan your aorta for any changes every three months, six months, or annually.

If the bulge in the aorta is wider than 4.5 centimeters, your doctor may recommend surgery. This is because a significantly enlarged aorta is at risk for aortic dissection and possible rupture.

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 department.