Need some support very worried

[Laburnum35]

I was told at xmas that i have a thoracic aorta aneurysm, i have been told there will be a wait to see a cardiologist. I have only just received a report back from the hospital that actually says what is wrong, now i'm scared to do anything strenuous. I have a pain from top of arm to elbow and on the letter it said my subclavian artery that is 2.3cm and the distal arch of the aorta is ectatic measuring 4.13cm. Has anyone else had this diagnosed and what can i expect, i dont know when i will get to discuss my situation with a Cardiologist and i'm fearful. The letter also says that my aorta is classed as anatomical variant as it is on the right side of the thoracic cavity ( apparently rare). Thank you.

[Robfromwales]

I had a 5.2 cm TAA but not in the arch. I advocated for a graft as despite not hitting the normal 5.5 cm threshold for surgery, I had a bi cuspid aortic valve which increased risk. I had open heart surgery to repair the TAA but didn’t have valve changed as openable area good with no stenosis. Do you have a bicuspid valve?

[Laburnum35 in reply to Robfromwales]

Thank you for responding Rob, the letter never mentioned a bicuspid valve so i am assuming i haven't? It sounds like you've had a bad time of it, i hope your healing ok and feeling better. Thank you.

[JulianM]

My own oversize aorta came as a complete surprise to me when it was found five years ago, as an incidental finding when I volunteered for a research project. By comparison with yours, mine turns out to be pretty standard, in that my enlargement is closer to my heart, in the tubular ascending aorta. I'm at 48mm so mine is bigger than yours! But it may be a similar shape (I have seen my scans) - i.e. swollen all round (which is what ectasia means ...) as opposed to just in one place on one side (which is a higher risk condition, called a saccular aneurysm).

It seems to me very unlikely that your symptoms are directly related to what is going on in your aorta. I also think you are a long way from needing surgery, though you do need to be monitored. However, I'm not a doctor and I agree you should be getting specialist advice.

The anomalous layout of your blood vessels is something you were obviously born with and there is a possibility that this does increase the risk of things going wrong later in life: the people who can best advise you about this will be specialists in an adult congenital heart disease team. They will want to find out more about your family history and might offer genetic tests as well as assessing your current health.

It is worth noting that most of the evidence about risk from strenuous weightlifting relates to people with enlarged aortic roots and ascending aortas, which is what you might expect because that is the part of the system where the pressure is highest as the blood is pushed out of the left ventricle. The people at highest risk are those with genetic conditions that tend to lead to enlargement in the aortic root.

If you have high blood pressure, then it may be important to do something about it; if you don't know, then there are BHF resources on monitoring it at home, which is likely to be more useful than getting it checked in a clinic (where my own blood pressure tends to go sky high ... it's known as a 'white coat' effect).

Hope this is helpful! Happy to try and answer any other questions, and wish you all the best.

[Laburnum35 in reply to JulianM]

Thank you very much, you are very kind to reply. Julian you have helped me enormously in finding some resolution until i can speak to a cardiologists. Thank you.

[Cliff_G in reply to Laburnum35]

I would be careful comparing a distal arch diameter of 4.1 cm with the standard figures for the ascending aorta of 5.5 or more recently 5.0 cm for the intervention point. I think you need an experienced cardiothoracic surgeon to determine the relevant figure for you.

[fishonabike]

you might find it helpful to call the British Heart Foundation Helpline, this is staffed by specialist nurses during office hours - they may not have personal experience of your condition but they will have information about what to expect and should be able to reasure and inform you

[Laburnum35]

Thank you, I was thinking of doing that so I'll have a word with them.

[Cliff_G]

Laburnum,

In cases like these of significant aortic anomalies and enlargement, I always have the same few pieces of advice, which I wish I'd been given, but learned the hard way via an aortic dissection in spite of monitoring:

1. Get seen by a specialist aortic centre. In England you have the right to select a centre (the NHS Choose and Book scheme). You need to be seeing someone who has actually done the potential surgery many times, and has managed many cases as to deciding what to do and when. Cardiologists will basically go by the published international Guidelines, but Guidelines can easily be up to 10 years behind, whereas aortic/cardiothoracic surgeons know the latest specialist and often unpublished info in what is a fast moving area of medical knowledge. Top centres are such as Barts, Liverpool, Papworth, Bristol, Southampton (I don't know where you are, and there are others I haven't listed). As your aortic arch and carotids are involved, this automatically puts you in a group of patients who may need the highly specialist surgery needed for such cases, in addition to the fact of your right-sided aorta.

2. Get your blood pressure well under control, which means below 120/80, or lower if possible. And don't wait to take the usual NHS route of try-this-med-try-that and "we don't treat unless you're above 140/90". That's true for ordinary preventive cardiac disease, but not for aortic disease. There's a recent paper saying risk of AD increases above 110/75. Show your GP this: aorticdissectionawareness.o... And yes, be careful about activities that spike your blood pressure.

3. Include beta blockers in 2. They have a protective effect on the aorta in diseases like Marfan, and it is thought this may also be true for non-Marfan cases.

4. Not wishing to alarm you, but this is a pragmatic precaution i.e. "hope for the best but plan for the worst": Get and wear a medical alert bracelet and ensure it states your aortic conditions. Too many cases of dissection get initially diagnosed as a heart attack (as mine was). You need a way of communicating your condition straight away to paramedics and A&E staff. Yes, an AD hurts a bit (the body naturally controls the pain to a limit - mine was bearable) but if you're diagnosed quickly and correctly it makes a world of difference.

All the above may seem alarming on top of what you've already learned, but these are the best precautions you can take and will substantially reduce your risk in the short and long terms.

Very best wishes, Cliff

[Laburnum35 in reply to Cliff_G]

Dear cliff, thank you so much for all this info, I will certainly act on it. It's hard to know what to do in this situation and who it's best to talk to that can help and have the most knowledge. I naively thought a cardiologist would be best so I can't thank enough for sharing your experience and pre-arming me with the best help I can get. I hope you go from strength to strength and recover well.

[Cliff_G in reply to Laburnum35]

Thanks. Cardiology is very often the speciality through which aortic problems are first detected - mine was, with my enlarged aorta found during tests on my A Fib. But there's no single speciality, or "-ology", for the aorta. The valve is dealt with by cardiologists, and if eventually needed, cardiac surgeons, the first part of the aorta by cardiothoracic surgeons who specialise further into the aorta, and the descending aorta by vascular surgeons. Your carotid artery will be of interest to a vascular surgeon, if it were a lone condition. But the aorta does not respect doctors' professional boundaries, so it is often the patient (especially in the early stages, like you) who needs to make sure you're attending the right specialist centre. I'm just glad I'm able to use my experience to point others in the right direction. Good luck.

[JulianM in reply to Cliff_G]

For myself, my biggest mistake was thinking that a cardiologist who is also a surgeon and interested in aortic valves would also be interested in ascending aortic aneurysms! However, it worked out well because they agreed to refer me to another team who actually were interested in that area ...

I'm really in agreement with Cliff, in that the most recent guidance talks about 'multidisciplinary aortic teams' as the mark of an aortic specialist centre.

The adult congenital heart disease team who are monitoring me includes an aortic specialist who is a cardiologist and also several cardiothoracic surgeons who regularly operate on the thoracic aorta. The aortic cardiologist runs a joint clinic with a genetics consultant specialising in aortic, vascular and cardiac conditions.

As Cliff says, vascular surgeons may come into the picture, especially if any action is called for in relation to your subclavian artery.

My experience is that it is great to have an early discussion with a surgeon to clarify the overall direction of travel, even if surgery is (hopefully) years away and they then refer you back to a cardiologist for routine monitoring.

For now, go to the cardiology appointment and have a discussion about whether you can or should be seen by them or referred on.

[Laburnum35 in reply to JulianM]

Thank you, this has been very informative and helpful and thanks to you and Chris I am at least able to go into this with my eyes wide open. It's taken a lot of my mind to have all this input, especially as I have been told Im probably looking at July before getting an appointment with cardiologist. I have also sent an email to bhf so for now I get some further input from a vascular nurse. Thank you.

[Laburnum35 in reply to Cliff_G]

Thank you Chris your input is really appreciated. I will keep this community in the look as to my experience and what has happened. Good luck to you to.