People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do.
Symptoms of aortic aneurysm may be related to the location, size and growth rate of the aneurysm and can include:
- Pain in the chest, neck, and/or back
- Swelling of the head, neck, and arms
- Coughing, wheezing, or shortness of breath
- Coughing up blood
Symptoms of aortic dissection usually appear suddenly and may include:
- Severed, sudden, constant chest pain and/or upper back pain, sometimes described as “ripping” or “tearing”
- Pain that feels like it is moving from one place to another
- Unusually pale skin
- Faint pulse
- Numbness or tingling
- Paralysis
- In some instances, there may be no pain but a sense that there is something terribly “wrong.”
If a dissection is suspected, a person needs immediate medical attention and should go to a hospital emergency department right away.
What you can do: Unless someone has a known diagnosis of Marfan syndrome or very obvious physical characteristics that would indicate Marfan syndrome or a related condition, reports of chest pain often do not automatically raise the possibility of aortic dissection in the emergency room.
Therefore, be sure that you are prepared to:
- Advocate for yourself by telling emergency department staff that you have Marfan syndrome or a related condition in order to appropriate scans for dissection quickly.
- Communicate effectively with doctors and nurses in the emergency department.