Daughter's "Dilated Sinus of Valsalva"

[faxmom]

Thank you so much for this wonderful forum. My daughter, who just turned 10, is extremely active--on a swim team and a runner. For the past 2+ months, she's complained that her "heart hurt" (an "ache and a burn" directly over her heart). She has also had a few incidents where she felt her heart was "racing" or "pounding out of her chest"(130 bpm max, however), and she has lightheadedness and pain at the same time. Not brought on with exertion or anxiety--both at school and home. Pediatrician did an exam and EKG and sent it to the Children's Heart Clinic with a referral. Met w/the cardiologist there last week, and he said the EKG/exam normal, and the racing heart not a problem, unless it goes up to 200s. Painpain was probably benign. To be safe, he ordered an echo.

Conclusions of echo:
1. The sinuses of Valsalva are diated for the patient's body surface area. Upper normal is 24 mm, and this patient's is 28 mm.
2. The main pulmonary artery appeared mildly dilated.

Dr. told us that he's not worried--just come every 1x every 2 years for echo. "No restrictions on activity, because if the aorta is going to erupt, it's going to erupt." I left rather shocked, and wished I had asked a million more questions. I'm wondering if this is a condition we should be worried about. Is there anything we can do to be sure it doesn't "erupt"? Should we limit activity? Is there anything else we should be doing? Should we get a second opinion? If this were your daughter, what would you do?Sorry for the long message, and THANK YOU in advance for your help. I really appreciate it.

[faxmom]

New threads will probably be closed soon. If anyone has helpful info they'd be willing to share, I'm at ***@****. Thanks a lot.

[faxmom]

Thank you for your responses. I was so hopeful to get some kind of an opinion from the forum doctor as to whether or not I should be worried about all of this, given the actual facts. However, I still don't know! Does anyone else know if this sort of degree of dilation is a big deal?  

[Schmoomcgoo]

Any dilation of the ascending aorta that is accompanied by pain needs to be carefully evaluated by an aortic specialist because symptoms trump size, regardless of what that size is.  Any dilation of the sinuses seen by echo needs to be followed up with a CT or MRA.  Echos cannot always visualize the entire Ascending aorta.  A possible "tissue disorder" to accompany a dilated ascending aorta (the sinuses are the part of the ascending just "downstream" of the aortic valve) is a bicuspid aortic valve--1-2% of the population has a BAV and some studies show that up to 50% of those are accompanied by an aneurysm.

[faxmom]

THANK YOU! Yes, let's see what the Dr. says. I think these people at Cleveland Clinic really know their stuff.

[nickppatel]

Well, he's the doctor, not me, but *I* think it's something you should be concerned about and it's something worth seeking a second opinion over. Both the hospitals you mentioned are excellent places to take your kid.

I think you should probably wait to see what the forum doctor says, since he/she is FROM the Cleveland Clinic. That should be an indicator as to what you should do.

Best wishes, and if you have any more questions, feel free to ask...

[faxmom]

I'm in the Minneapolis area, so I know that I can go to Mayo Clinic in Rochester, if necessary, or even Cleveland Clinic, if that's what I need to do. However, the cardiologist we saw made it sound like such a "no big deal" thing that I thought I must be just a overly protective/worried mom. Of course, as you can tell, I wasn't willing to simply let it go for another two years, without first checking around a little. As soon as I left the office and thought about some of his comments, I thought, "What normal mom WOULDN'T get a little worried about it?!"