DILATED AORTA

[douladeelz]

Hi everyone. Approx two months ago I was told I have a dilated aorta. Have been waiting to get an appt to see a hospital cardiologist but to no avail. Is anyone suffering from this?

[Rosie1066]

Hi, yes I have one too, 3.8 cm and hasn’t grown in 14 years, but it is monitored as I also have other heart issues. Often they stay stable for many years.

[JulianM]

I was diagnosed with a dilated ascending aorta five years ago, aged 59, when I volunteered for a sports cardiology project. It had big implications for me at the time, because I was taking part in international sports competitions and had to withdraw from them all, and yet ... I had no symptoms, and still have none. My aorta is around 4.8 cm in diameter, seems to be stable, but it is definitely abnormal (I have seen the scans) and is being monitored by a specialist (Adult Congenital Heart Disease) team.

I am very happy to share what I've learned, but it starts with understanding that there are potentially several very different conditions involved here.

So, it would help to know:

* which part of your aorta is affected? (abdominal is extremely different to ascending)

* how has it been measured and how large is it? (CT scans or MRIs are needed for accurate measurement; aortas above 4.0 cm may need investigation but are not high risk; aortas above 5.5 cm need surgery right now; in between is a grey area)

* is your aortic valve normal? (bicuspid aortic valves, best seen on echocardiograms, may be present in up to 2% of the population and may be linked to aortic dilation)

* do you have a family history or reasons to think you may have a genetic condition affecting connective tissues? (Marfan syndrome is the best known, but there are at least 11 high risk conditions that are tested for in genetic panels, when aortopathy is seen in people under the age of 60 or where there are reasons to suspect a genetic basis)

* do you have high blood pressure? In which case, doing something effective to manage it is the first priority. If you're not sure, home monitoring is going to be more relevant than clinic measurements.

Hope this is helpful, but short answer is, no, you are not alone.

[Coper10]

Hi, by chance I was found to have a dilated aorta measuring 5.8cm. As Julian indicates, the size is key - that meant I needed an urgent operation. I was subsequently found to have Marfan syndrome. I have recovered well, work, look after my family, keep fit and generally enjoy life. It is likely that if yours was of a size to be really concerned about, you would already know about it. If not at that point, you will be monitored on a regular basis to see if it changes in size.

[Lexi72]

Hi I also have a dilated ascending aorta and aortic root 4.6 cm as a consequence of a bicuspid aortic heart valve. My condition is also stable and asymptomatic and has been for 5 years since it was first diagnosed at 57 . As Julian M explains the key is how dilated. If it reaches a certain size typically 5.5 cm usually but 5.0 cm for biscuspid and lower for those with marfin syndrome the doctors may recommend an operation to replace the valve assuming it is a valve problem and/or or to fix the aorta. Also if there is a family history of problems or other issues such as regurgitation or stenosis it also be appropriate to operateIf you are below the limits the doctors will monitor you with regular echos and will be able to advise on your condition. It is very worrying waiting to see the cardiologist but the good news is that it has been diagnosed so your condition can be monitored and if you need an operation or you can have one at the right time and if necessary they can prescribe medication .Also try not to let your worry take over your life as it may (like me) be many years before it is necessary to do anything about it. Try also not to search dr google but stick with the BHF website and the NHS website. Once you have a diagnosis if you want to talk to someone the BHF nurses are very helpful. There is a link to the helpline on the BHF website. The service is free and calling them was the best thing I did after being diagnosed Best wishes

[JulianM in reply to Lexi72]

One small caution: the NHS website literally has nothing about thoracic aortic aneurysms/dilation, and the BHF website is pretty weak too. They're both much stronger on abdominal aortic aneurysms.

The US Marfan Foundation is one of the largest charities in this field and has good information resources on its website about the whole range of what the Americans call 'heritable' aortic conditions. The much smaller UK specialist organisation, the Marfan Trust, is also now broadening its remit to cover Loeys-Dietz syndromes too.

There are two specialist UK charities supporting people who suffer from, or are at high risk of, aortic dissection: both have a range of information resources on this - but unless you have a family history of aortic dissection or other factors putting you at exceptional risk, it's hopefully not going to happen. You can search for 'Aortic Dissection Awareness UK & Ireland' and 'Aortic Dissection Charitable Trust' to find them. (I'm actively involved with one of the charities and respect both for the high quality of their engagement with health professionals and people who have experienced dissections.)