My 15 year old, 5'11', 115lb., daughter has a bicuspid aortic valve with mild regurgitation and an ascending aortic dilation of 4.1 cm. She takes 3.75mg of enalapril daily to lower her blood pressure. She is on her high schools cross counrty, basketball, and softball teams. After a series of tests, her cardiologist advised her to stop participating in all of these activities. Do you agree that this is necessary? My daughter is devastated! Would corrective surgery allow her to possibly participate in these sports?
Bicuspid aortic valve is a genetic disorder which affects some people in selected families and is actually though to be more of a connective tissue disorder which manifest not only in the diseased aortic valve but also in the proximal aorta. Your daughter, although only having mild aortic regurgitation at rest already has signs of valvular dysfunction as well as aortic root dilatation. Neither of these values ( mild aortic insuficiency and mild aortic root dilatation,) are in themselves in the absence of symptoms suficient reason at the present time to support open heart surgery. However, progression of the aortic root dilatation and insuficiency has been show to be decreased by the use of enalapril, especially if hypertension is present. I am not sure what the test performed were, but if thery included a stress test to see how the aortic valve behaved with stress, it may have shown worsening of the aortic insuficiency with stress and hencre his recommendation for her to stop high endurance activities such as cross country or basketball. He is probably simply attempting to prevent aortic root dilatation and decrease the risk of aortic dissection, which is a life threatening complication of long standing aorti aneurysms.
I was interested to see your post because I have a 15 yr old son about the same size as your daughter with almost the exact same diagnosis. The only difference is his regurgitation is at mod/severe and his asc. aorta is at 3.5. He takes Lisinopril, 20 mg a day. He wants to go out for soccer this year, so the cardiologist gave him a treadmill test (he had been noticing a few "odd" heartbeats, nothing serious). Even though he was only able to complete seven minutes there were no abnormalities noted, and he was cleared for soccer. I'm wondering if your daughter's doctor is thinking more about the dilated aorta than the regurgitating AV. From what I understand, it is quite possible to go back to athletics after this surgery. But surgery is not performed until certain heart measures are reached-- the left ventricle has to be enlarged to a specific point and the ascending aorta reached a specific dilation. If there are symptoms they will operate sooner. I know that when the aorta is significantly dilated you want to avoid blows to the chest which could occur in some sports. I know what you are going through and wish you good luck.
Very sorry to hear of your daughter's problems. Personally, I suggest that you get a second, and perhaps third opinion of the your daughter's condition and treatment program, and to get those opinions from a leading institution in treating aortic valve and ascending aortic conditions. Even if all of the opinions concur, at the least it will build you and your daughter's confidence that what you're doing is the right thing.
When I sent my last post I realized I had left out the most important thing I wanted to say--exactly what pbanders said--it never hurts to get a second opinion. In the three years I've been researching my son's condition I've been very surprised to see how much variance there is from one cardiologist to another when it comes to knowledge about aortas and aortic valves--particularly bicuspid aortic valves. The first cardiologist we were referred to did not work out for us, so we found another who is much more up to date. My son also sees, in addition to his regular cardiologist, a pediatric geneticist every two years. Between these two we feel that we have all the bases covered. Again, the best of luck to you.
(Thanks, pbanders, for your valuable posts on valve issues.)
As you said, not just every cardiologist is an expert on bicuspid valves and aorta conditions. Same is VERY true of cardiac surgeons. My surgeon has done hundreds (perhaps a thousand) aortic surgeries, that's why I picked him instead of someone who has done a dozen or less. Always make sure that your specialists are well-versed in your particular condition.
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