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Daughter's "Dilated Sinus of Valsalva"
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.
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.
No, your earlier response was not at all too long. I totally agree with you, and I already have a call into my daughter's pediatrician for a 2nd referral. I'm hoping we can get into Mayo. I'm sure I'll be met with some resistance, since Children's Heart Clinic has such a great reputation. When he gave us the referral, he said that "all of the doctors are great over there." At the same time, I really don't think that was the case for us. So, hopefully, it will go okay. I also want to continue researching the condition and understanding the "norms", since I'm better at asking the right questions, etc., when I'm totally prepared and have a good understanding of the condition ahead of the appointment. Make sense?
The z-scores are generally calculated in a formula, but to be honest, I don't know what the formul is, just what it does and how it is used. I would agree that it would be ultimately easier for you and your daughter to let the pedi cardilogist to put things in the right perspective given all of the information. ?Not to say that you can't read a chart or do a formula, but over the years I've learned that you need to take in a multitude of factors to come up with a safe and reasonable approach to the situation. These are the things that pedi cardiologists ( and the adult ones too) know that the general public doesn't know, and that isn't readily available for easy consumption on the internet. I hope this helps some more.
Good night and good luck.
Good night and good luck.
Hi there. Do either of you know where I might find a simple to read "chart" that shows "normal" ranges/sizes of aortas and pulmonary arteries? I've looked around a little, with no luck. I'm at ***@****. Thanks again.
Wow. VERY helpful information. THANK YOU! I think we'll go ahead with the second opinion--mainly because the cardiolgist we saw was so short with us, and we left with a million questions. It sounds like we would have a ways to go before rupture would be a true worry--that's reassuring. My daughter is currently training to run a 10k with her gym teacher in late spring, and I was about ready to put the breaks on that. I would feel horrible if anything we were letting her do contributed to enlarging her aorta further. She loves competitive swimming and running, but I'd be more than willing to try to help her find other activities, if her health is being compromised. Thanks again.
I would also get a second opinion, the doctor is right, but but he has poor bedside manners, and should be relieved of his/her services. I would get another appointment, but this isn't a critical situation, so don't expect to be seen like tomorrow. It could happen, but not likely.
In other words, you have alot of time to deal with the situation. I'm talking in terms of months to years. There is no need to freak out right now. I don't believe they would be alarmed unless it was over roughly 4.0+ cm at her body size.
As far as the size of the aorta and pulmoary artery, they have things called z scores that calculate the appropriate size vessel measurments for the appropriate size body. We also measure the aortic root, sinus of Valslava and part of the ascending aorta to determine z-scores. There can be people who have Marfans while they don't outwardly have the typical Marfan like features. If you other cardiologist has any doubts, they'll refer you to a geneticist that can give you the skinny on the situation.
The aorta could rupture, but that could easily be years (20+) down the road, and this is at the very very earliest. I would also expect to be seen for an echo every year to check on the size of the aorta. She might get beta blockers (medicine) to take to help lessen the "load" on the aorta. She might have to take these for the rest of her life, but really that is getting ahead of things as they stand right now. As far as getting a CT or MRA like schmoomcgoo said, that probably won't happen either. Echo can generally see the area that is affected by Marfan's quite well. The echo would also be able to determine if the aortic valve is bicuspid or has three leaflets like it is supposed to.
As far as reducing her physical activity at this point, I wouldn't. Right now there isn't enough to make me think otherwise. She has a relatively long way to go before she gets into troublew aorta-wise. It might be a real possibility in the future (don't hide that from her), but for now, no.
Good night, and good luck.
In other words, you have alot of time to deal with the situation. I'm talking in terms of months to years. There is no need to freak out right now. I don't believe they would be alarmed unless it was over roughly 4.0+ cm at her body size.
As far as the size of the aorta and pulmoary artery, they have things called z scores that calculate the appropriate size vessel measurments for the appropriate size body. We also measure the aortic root, sinus of Valslava and part of the ascending aorta to determine z-scores. There can be people who have Marfans while they don't outwardly have the typical Marfan like features. If you other cardiologist has any doubts, they'll refer you to a geneticist that can give you the skinny on the situation.
The aorta could rupture, but that could easily be years (20+) down the road, and this is at the very very earliest. I would also expect to be seen for an echo every year to check on the size of the aorta. She might get beta blockers (medicine) to take to help lessen the "load" on the aorta. She might have to take these for the rest of her life, but really that is getting ahead of things as they stand right now. As far as getting a CT or MRA like schmoomcgoo said, that probably won't happen either. Echo can generally see the area that is affected by Marfan's quite well. The echo would also be able to determine if the aortic valve is bicuspid or has three leaflets like it is supposed to.
As far as reducing her physical activity at this point, I wouldn't. Right now there isn't enough to make me think otherwise. She has a relatively long way to go before she gets into troublew aorta-wise. It might be a real possibility in the future (don't hide that from her), but for now, no.
Good night, and good luck.
faxmom -
In my opinion, this degree of dilatation *IS* a big deal, and you SHOULD be concerned.
More accurately, this degree of dilatation is big-enough of a deal for you to seek a second opinion very soon. It needs to be examined by a qualified pediatric cardiologist, preferably at either the Mayo or Cleveland Clinics or even a large hospital like Univ. of Minnesota, as soon as possible.
If she was MY daughter, I would:
1.) Get the soonest available appt. with a pediatric cardiologist - do some phone work to find out what's the soonest available, and make sure to emphasize that she's having symptoms and the size of her dilatation to get in quicker.
2.) Seriously reduce her physical exercise until the condition if evaluated by a good, solid cardiologist.
Again, others may differ; that's what *I'd* do.
Don't stress yourself out too much over it. Worry is useless. Action is fruitful. It's disconcerting, but with proper medical care, everything should be fine. If she complains about severe pain, take her to the ER, but besides that, schedule and go to a good cardiologist, and everything will be OK.
God bless.
Nick
In my opinion, this degree of dilatation *IS* a big deal, and you SHOULD be concerned.
More accurately, this degree of dilatation is big-enough of a deal for you to seek a second opinion very soon. It needs to be examined by a qualified pediatric cardiologist, preferably at either the Mayo or Cleveland Clinics or even a large hospital like Univ. of Minnesota, as soon as possible.
If she was MY daughter, I would:
1.) Get the soonest available appt. with a pediatric cardiologist - do some phone work to find out what's the soonest available, and make sure to emphasize that she's having symptoms and the size of her dilatation to get in quicker.
2.) Seriously reduce her physical exercise until the condition if evaluated by a good, solid cardiologist.
Again, others may differ; that's what *I'd* do.
Don't stress yourself out too much over it. Worry is useless. Action is fruitful. It's disconcerting, but with proper medical care, everything should be fine. If she complains about severe pain, take her to the ER, but besides that, schedule and go to a good cardiologist, and everything will be OK.
God bless.
Nick
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