My thirteen year old daughter with Turner's Syndrome was given an echocardiogram yesterday as a follow up with her bicuspid aortic valve. The cardiologist discovered that she had a moderate aortic dissection. He wanted us to come back in a year to determine how much more it has widened and to discuss our options from there. The last echo was done a little over two years ago and nothing was mentioned then. My concern is with such little research done on this topic with Turners patients, is a year a long time to wait for a follow up on her condition? He wasn't sure how quickly this happened and I am terrified of what will happen not knowing how quickly it got to that point.
Having a moderate dissection in the face of a bicuspid aortic valve and Turner syndrome is definitely worrisome to me, as we know that these patients are at risk for not only aortic dissection but sudden death in association with this. My recommendation here is that you obtain a second opinion with a pediatric cardiologist familiar with this entity and not wait a year. Obviously, without looking at your daughter's studies or evaluating her more completely, I cannot say what her immediate vs. long-term risk is, or even if waiting for one year is the right thing to do. But, in someone like her in this patient population with a known moderate (not mild) dissection, I think that it is appropriate to have another evaluation.
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