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Old 04-18-2010, 05:52 AM   #1
jcn jcn is offline
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Dilated aorta and other symptoms

I'm new to this board but am desperately trying to find some out some information. (I posted yesterday under the "open" section but meant to be more specific so I'm re posting under this heart section).

My husband had an ultra fast heart scan done 5 years ago that indicated he had a dilated aorta ("at sinuses of valsava" - which I've learned means ascending aorta at the root). Five years ago it measured 4.5x4.6cm. He had this done on his own because his mother and father both passed away from heart conditions, his mother's an aneurysm. We didn't know what this meant at the time and the doctor who reviewed it (a gp) didn't make a big deal out of it.

Last week he had a horrible headache which was a bit different for him (I say different because he does get migraines frequently at the base of his skull and neck). Anyway, this one made him vomit and he got another one very suddenly the next day, so at my urging he went to the doctor about the headache and (finally) asked about this "aorta thing". The doctor ordered scans for both and he is scheduled to have a contrast and non-contrast of his head (for the headaches) and a CT Angiography of his chest to measure the dilation.

I've been researching and now I'm worried that my husband could perhaps have Marfan Syndrome. He is tall and thin, he has the "positive wrist sign" (pinky and thumb overlapping wrist), his arm span is 75" while his height is 70", he has flat feet, astigmatism (sp?), horrible vision (nearsightedness ? - not sure, but real thick glasses), and now of course, a dilated aorta. He also always seems to be so tired.

I'm scared to death that all this time has gone by and also angry. It seems to me that this "dilation" (isn't this actually an aneurysm?) should have been monitored at least every year and he should have been referred to a cardiologist. He was told to do neither. I'm so scared right now, I feel like we are sitting on a ticking time bomb. His tests are Friday, but that just seems like forever to wait now that it seems so serious (to me).

Does anyone have any information they could share to help shed some light on this for me? Any info would be appreciated.

Thanks so much!
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Old 05-22-2010, 01:39 AM   #2
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Re: Dilated aorta and other symptoms

Hi,
My son has a diliated aortic root and the danger is 5 cm but it sounds like your husband is quite tall but that could be the norm for him. Cardiologists go by the norm but I have heard that some have larger aortic roots which are the norm. I know what your going through i am stressing as well, but keep a lid on it and yes it should have being monitored but at that size has he considered having it fixed.

Confused 49

Last edited by hb-mod; 05-22-2010 at 04:53 AM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
Old 05-23-2010, 05:12 AM   #3
jcn jcn is offline
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Re: Dilated aorta and other symptoms

Thanks so much for your reply. The CTA actually showed no enlargement (after 5 years) so that was such a relief! The cardiologist did say he would want to repair it if it got to 5cm. He wants to put him on medicine to lower his blood pressure but his blood pressure is already so low - it seems strange. He said he needs to come back in 6mos and he'll probably be monitored now every year after that.

How old is your son? And do you know the reason his is enlarged? The doctor said we might want to have my kids checked out just to make sure there is not a genetic component. I am taking them in for their checkups in June and I am going to ask about it then.

Take care,

jcn

 
Old 05-24-2010, 12:19 AM   #4
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Re: Dilated aorta and other symptoms

Quote:
Originally Posted by jcn View Post
Thanks so much for your reply. The CTA actually showed no enlargement (after 5 years) so that was such a relief! The cardiologist did say he would want to repair it if it got to 5cm. He wants to put him on medicine to lower his blood pressure but his blood pressure is already so low - it seems strange. He said he needs to come back in 6mos and he'll probably be monitored now every year after that.

How old is your son? And do you know the reason his is enlarged? The doctor said we might want to have my kids checked out just to make sure there is not a genetic component. I am taking them in for their checkups in June and I am going to ask about it then.

Take care,

jcn
Hi

Thanks for your message, my son is only 17 and it was found by accident as his legs were going blue so I took him to the local GP. My son was sent for a heart echo and it showed up the dililated aortic root with two very small leaks. Well I was devesated as i thought he was going to die. In a couple of years it has got abt 2mm bigger which is not much, but what the underlying cause is they thing could be connective tissue. It is not Marfrans as the heart specialist did some very routine tests, so they need to find out why. It could be he was born like this.

My son was going for a CT scan but they wont do it because of the high dose of radiation and because of his age, so they have suggested an MRA do you know anything about this?

I am glad your hubby well is ok, I know its worrying but if its monitored its ok. As my specialist said that my son wouldnt collapse and die, but as a mother how can you not worry.

Hope to hear more from you,
Janelle

 
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