severely dilated aortic root at sinus of Valsalva level, with severe AR;.; - URGENT referral to cardiology recommended;.; - severely dilated LV with preserved systolic function;.
Can anyone help me understand what this means
I have been contacted by the local hospital and have an appointment 28th April 2023
We are very worried not sure what can be done or what this means to life expectancy Google is just making us worry more ( us meaning my wife and family)
Thank you in advance
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1961J
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Hi there - it means you have joined the club I found myself in when I volunteered for a sports cardiology project, thinking I was as healthy as I had ever been, only to be sat down after a transthoracic echocardiogram (TTE) and told I had a dilated ascending aorta and would need to avoid any heavy lifting, any competitive sport, and get referred to a specialist cardiologist.
For now, do avoid any heavy lifting, and get a blood-pressure checker - the BHF has an online shop - so you can learn to monitor your blood pressure at home. Blood pressure checks in clinics have a way of being unnaturally high and not a good guide to whether you need to be on medication. Your resting blood pressure in the morning needs to be kept down, I'd say below 120/80, maybe even lower.
Basically, what they have found is that your aortic root - the first part of your ascending aorta, where it emerges from the heart - is much larger than it should be, and that your aortic valve is not closing properly. This may be giving you some symptoms, like shortness of breath.
Essentially, you will need surgery, from a cardiothoracic surgeon who specialises in aortic conditions. This may include replacing your aortic valve, and either reconstructing your aortic root and ascending aorta or replacing it with a polypropylene tube.
It's major surgery, but vastly better to do it as a planned operation rather than as an emergency operation following an aortic dissection, which is one risk that may have given you an urgent referral.
There are other issues that the medical specialists will explore with you, such as whether there is a family history of aortic conditions or unexplained early deaths, which might lead on to further tests.
It's tough, but there are quite a number of us on this forum facing similar things, and successful surgery can lead on to pretty normal life expectancy.
There are specialist support groups around heart valve surgery, connective tissue disorders (where this condition is common) such as the Marfan Foundation (US-based) at marfan.org and also two charities in the UK focussed on aortic dissection. Although I haven't had an aortic dissection, I've learned a lot from Aortic Dissection Awareness UK and Ireland and I think some of the information resources from The Aortic Dissection Charitable Trust are really helpful too.
Happy to answer any questions I can - and wishing you the best of luck!
The other thing to add is that because your aortic valve is not working properly, your heart will have to do a lot of extra work to make up for it, and if you are not treated, it will go into 'heart failure' where the muscle is damaged. This is the main reason you need surgery sooner rather than later.
Hi Julian, Thank you so much for your reply, your message, has in a way made me feel more secure in my future..if that makes sense, in 2016 I ran the London and Berlin Marathons ...funnily enough one of the charities I raised money for was BHF,
Thank you for your offer to answer any further questions I will try not to ask to many
Hi Jeremy - please don't hesitate to ask; and you are definitely better off for knowing about it than for not knowing; the options are better, the earlier anyone finds out. It's not linked to general cardiovascular disease, by the way: much more likely to be a genetic issue, although there is still a lot to be learned in this area.
Exactly. It runs in families. With that history, your condition is almost certainly genetic and high risk for dissection. Whether or not genetic tests are done, all other living first degree relatives should be screened.
Julian's posts are spot on, and I trust your posting and the replies have really helped to clarify the situation for you. The fact that your sister died (sorry to hear that) via an aneurysm is truly vital information and as you say, definitely let the Consultant know this.
It's even more important since from your original post, it looked to me like the main involvement was at the valve area itself (the sinus of valsalva is the slightly expanded area, even normally, in which the valve sits). The report doesn't mention an enlarged ascending aorta which, given the valve, they certainly would have looked at.
The left ventricular dilation is possibly a consequence of the valve leakage, since the heart has more to do. The heart is a muscle and can respond to demands made on it. Its tissues may also thicken, which is called hypertrophy, though that's not mentioned. The preserved systolic function is a good indicator, it means the left chamber is pumping properly and using the full volume available.
Those two on their own could be seen as a cardiac condition only, but with your sister's history it definitely expands the scope of what you're looking at.
It's frightening to be diagnosed like this, but definitely better than finding out in an emergency situation (like mine was).
Many Thanks Cliff, These message really do help with my anxiety, It is so helpful,whilst waiting for appointments, to speak to people in similar situations
Hi I have severe aortic stenosis and joined this where someone directed me to a Facebook group uk aortic and heart defects pre and post surgery Brilliant group very supportive as this one is but everyone has similar problems to us Once every three weeks they do a Zoom meeting so you can talk to others face to face
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