About 90 percent of people with Marfan syndrome will develop changes in their heart and blood vessels.
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If you have Marfan syndrome, you have abnormal connective tissue that can cause your blood vessel walls to weaken and stretch. This damage often affects the aorta, the main artery that carries blood from your heart to the rest of your body.
When the walls of your aorta stretch, you have a higher risk of:
- Aortic aneurysm (bulging)
- Dissection (tearing)
- Rupture (bursting)
These can lead to a life-threatening medical emergency.
In this Q&A, Lars Svensson, MD, PhD, Chairman of Cleveland Clinic’s Sydell and Arnold Miller Family Heart & Vascular Institute, answers five of the most common questions he hears from patients with Marfan syndrome.
Q.: When does an aortic aneurysm require surgery?
A.: The larger the aneurysm, the higher the risk of dissection or rupture — and need for emergency surgery. Preventive, repair surgery is an elective, non-emergency procedure that has much better outcomes. Futhermore, long term survival is then similar to age and gender matched survival for the United States.
For the way Cleveland Clinic performs the modified reimplantation operation, now exceeding 700 patients, for elective surgery a mortality risk of less than 0.5 percent can be expected and a 95 percent or better likelihood of the repair working beyond 10 years after surgery.
Typically, we recommend repair surgery when aneurysms become 5.5 cm or larger. However, we may recommend it sooner if you have:
- Marfan syndrome
- Loeys-Dietz syndrome
- Shorter, smaller stature
- Family history of aortic dissection
- An aneurysm that is growing quickly (5 mm or more per year)
Q.: Can I stop my aortic aneurysm from growing?
A.: Aneurysms can grow quickly or not at all, depending on the underlying disease. That’s why we monitor them with regular echocardiograms, or cardiac MRI or CT scans, if needed. Blood pressure control is important.
For patients with Marfan syndrome, the best ways to try to limit the growth of an aortic aneurysm is to:
- Keep blood pressure below 130/80 mm Hg. Often, we will prescribe beta blockers, ACE inhibitors or other medications to help
- Maintain healthy cholesterol levels
- Keep resting heart rate below 70 beats per minute
- Eat a plant-based diet
- Exercise moderately
- Avoid smoking
Q.: What does an aortic aneurysm feel like? How do I know if I have one or if it’s getting worse?
A.: Most of the time, you can’t feel an aneurysm. The only way to detect one or see if it’s changing is through imaging scans.
However, if an aneurysm is quite large, you may have:
- Pain in the jaw, neck, upper back or chest
- Coughing, hoarseness or difficulty breathing
- Pain in the lower back, abdomen or groin not relieved by body movement or taking pain medication
If your aorta has started to tear, you may feel severe pain in your chest or back or both. Some people also report pain in the abdomen or stroke symptoms, including sudden weakness, numbness or loss of balance.
Call 911 if you have any of these symptoms.
Q.: Should I be careful about exercising if I have an aortic aneurysm?
A.: In general, people with aortic aneurysms can still do light aerobic exercise, while carefully monitoring their heart rate. Sometimes a stress test will help us assess the heart and determine appropriate heart rate limits. Depending on your size, isometric exercise with more than 40 lbs. to 60 lbs. should be avoided and contact sports also should be avoided. In particular, rapid upward chest movements or body rotation while straining must be avoided as this may lead to aortic dissection.
We typically advise patients to avoid heavy isometric exercise and to not lift more than half of their body weight. Doing multiple repetitions with lighter weights is OK.
There are no limits on physical exercise or exertion after you’ve had (and recovered from) surgery to repair an aortic aneurysm. Cleveland Clinic has cared for professional athletes who’ve returned to active competition. We recommend discussion with an expert in the field of sports medicine and Marfan syndrome, depending on what sport you wish to play.
Q.: Should I be careful about doing other recreational activities if I have an aortic aneurysm?
A.: Flying in an airplane and sitting in a hot tub are typically safe for people who have an aortic aneurysm. There is no scientific evidence indicating otherwise. Other musculoskeletal problesm also must be taken into account.
Riding roller coasters or other thrill rides may be best to avoid, however. They can cause blood pressure to swing rapidly.