Knowing that you are at risk for aortic dissection puts you at an advantage in the event that you experience unexplained chest, back, or abdominal pain. A person who does not know they are at risk may not be treated with the same urgency as those who know they are at increased risk of aortic dissection.
Although aortic dissection is uncommon, it is not rare. When it is does occur, it is commonly catastrophic. Based on available medical information, there are probably 5,000-10,000 dissections a year in the United States. However, the number may be underreported since dissections that do not result in death or cardiovascular surgery may be recorded under a different diagnosis, such as chest or abdominal pain. The number of dissections may be also underreported because so few autopsies are conducted, and many deaths are attributed to “heart attack” or “sudden death,” when the cause is actually a dissection.
You are your own best advocate
Emergency departments may be very busy, and their knowledge about the risk factors for aortic dissection may vary greatly; therefore, you may need to advocate for yourself should you experience symptoms. Do not be shy about telling the doctors and nurses at the hospital what you know about your condition and the information about aortic dissection diagnosis and treatment.
Communicating effectively in the emergency department
Here are some important tips to help you communicate effectively with emergency department staff to assure you receive appropriate care.
Before any emergency happens, complete an Emergency Preparedness Kit. A good example of one is available on The Marfan Foundation website at marfan.org. Bring the completed kit to the emergency department with you should the need arise.
Be prepared to answer the following questions. If your doctor does not ask, speak up and tell him or her anyway.
Emphasize to the nurse or doctor that you
Provide your doctor’s name and phone number to emergency department staff and ask them to call at once for any additional information that may be needed for your treatment.
Medical alert bracelets are helpful, especially if you are unable to provide your medical history. The bracelet can relate a few key words or phrases that may be helpful to emergency department personnel. For example, people with Marfan syndrome might want to include on their bracelet: Marfan syndrome, aortic aneurysm, risk for aortic dissection, heart valve, Coumadin. Talk to your doctor about what is most appropriate for you to put on your bracelet.
The most effective tests to confirm or rule out an aortic dissection are a CT scan of the chest with IV contrast or a transesophageal echocardiogram (TEE). An MRA is occasionally used as a first test. The diagnostic test used by the hospital depends on what they have available and their expertise. If you have an allergy to IV dye, shellfish, or iodine, tell the emergency department staff. It is important to remember that a chest x-ray is not diagnostic for aortic dissection and, if dissection is suspected, a normal chest x-ray should not deter further evaluation.
Before an emergency arises, you might want to check with hospitals in your area to find out if they are able to offer the appropriate tests easily in the emergency department, and if they are equipped to perform emergency cardiac surgery should it be necessary.
Family members can be helpful. They can tell emergency department personnel about your health condition, especially your experience with aortic enlargement, aneurysm, prior dissection or heart surgery, medications, and anything they know about your current symptoms. They can also provide the name and number of your doctor. Make sure your family has this information in case you are unable to communicate.
You may be intimidated in an emergency department, but it is critical that you: