11 Year-Old St. Jude Valve Leaking

[MrsLuke]

I'm a 32-year old female diagnosed with Marfan Syndrome in 1997 after presenting in the ER with chest pain (turned out to be a small dissection in ascending aorta). Part of the 1997 surgical repair was mechanical aortic replacement with a St. Jude aortic valve (the rest was aortic shunt, coronary y-graft). I have recently developed a shortness of breath, despite being moderately active, normal weight (5'11" and 155 lbs), and without any heart disease. This symptom comes with the mildest exertion, sometimes even when at rest. I had a MRI of the entire length of my aorta last Wednesday, and the results show a leak from my aortic prosthesis, as well as mild regurgitation in my mitral valve (present for many years). The aortic leak is not, however, coming from the sutures but rather from the valve not closing completely. My doctor mentioned it could be a thrombosis and has scheduled a trans-esophogeal echocardiogram to investigate more closely. I began to research leaks with the St. Jude valve on the internet and discovered there are many types of St. Jude valves. I am concerned I may have a "Silizone", recalled in 2000. I was never told anything other than St. Jude, and the little card I was given to carry in my wallet also has no further information. There are apparently different sizes, different models... are there some types that can be ruled out or are more likely given my profile, surgery date, and/or medical circumstance? Can you think of any other cardiac-related explanations for my shortness of breath that I should mention to my doctor? Will a trans-esophogeal echo reveal the details required to diagnose any likely cardiac explanation? A few additional details: I had a baby in October 2006. I have also experienced transient light-headedness with a coinciding perceived (i.e. unconfirmed) drop in blood pressure and/or heartrate. Around the same time the other symptoms emerged, I also developed a persistent headache. Sorry so long winded--thanks!

[Cleveland Clinic]

It is very possible that your sympomts are caused by moderat to severe aortic regurgitation. It is often difficult to see the actual amount of regurgitation on surface echocardiogram so a TEE is a very reasonable proposition, and is in fact the most accurate way to measure the size of the opening. However, you mentioned that you had an MRI: I am not sure if this was a gated study or only a non gated study looking at the aorta. If it was a crdiac MRI then this test is very accurate in delineating the severity of aortic and mitral regurgitation.
The reason for the valve failing to close should be discernible fromthe TEE: either a thrombus ( make sure you remain anticoagulated at all times with INR >2.0), vegetation ( are you having fevers or chills?) or panus formation. These have different treatments: the first may be amenable to treatment with thrombolytics, the second may benefit from long term antibiotics and the third may require re-operation.