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rare heart defect

i have found out i have an "anonomolous right coronary cusp to the pulmunary artery i have been told this is extremly  rare and is life threatening.My doctor has never had a patient with this exact defect and is researching it.I have been told that less than 1% get it like this how rare is it and what would you think would be the options here? the artery is running up the middle of the heart and not providing flow to the right side or the bottom chamber.I am only 32 and I have 3 children one of which is handicapped.at this point I am getting worried and can't really talk to the family as I am being the strong one telling them it will be ok.Am I lying???? thank you  
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242509 tn?1196922598
MEDICAL PROFESSIONAL
It is the second most common coronary anomaly, and it can be life threatening if the right coronary courses between the great vessels ( aorta and pulmonary artery). This course can be checked on a CT scan or on a left heart catheterization with extreme lateral views. If that is the case there is a significant chance of sudden cardiac death and you should undergo surgical repair at an experienced tertiary care center. I would suggest that since this is not a common anomaly that you seek the opinion of an expert in this area at the nearest respected teaching facility.
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i have had the ct and this is how the cardiologist confirmed it.She is currently researching it and on the 4th i ham to have a nci stress test to see if it is going to require immediate open heart surgery or if we can wait.i was told the right artery is going between the 2 main arteries in the middle of the heart.my question is how worried should i be? As i said she Dr STronach told me it is so rare that less than 1% 9More around .25 of a percent has it) is it really that rare?? thank you
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