Thoracic aortic aneurysm

[Milkyuk]

Hi all, your stories are an inspiration and I feel weak posting this but just want my mind put at rest. It was a shock to be told I have a TAA and have worried myself silly for 3 months. Have my first cardiology appointment next week. What can I expect?? Thanks for your replies, ps, I'm 74 and thought I was fit for my age but am scared to do anything strenuous now??????

[Robfromwales]

hello,

What size is it and do you have a bicuspid aortic valve or any syndromes . Do your family have any history of anerysms or dissections?

[Milkyuk in reply to Robfromwales]

Haven't a clue, this was only found 3 months ago when I had a general lung health check. Have a sister with congenital heart disease, father died from heart attack as did a brother and mother. It measures 4.5 which I now understand is nothing to worry about?? Parents died 30 yrs ago so maybe not known as well then?

[sandandkev]

It must be scary,but have a friend who has an AAA and he's had it well over 5yrs and gets it measured yearly

[Lexi72]

hi it is really scary when you get the diagnosis but the good news is that you have been diagnosed and can now be monitored. I am not sure how the doctor diagnosed your thoracic aortic aneurysm . I assume that you had an echocardiogram if you know it is 4.5. But if you have just had an X-ray as part of you other check up They may want an echo and an MRI. The cardiologist is likely to ask whether you have any family history of aneurysms and then advise what is best for youUsually following a diagnosis you are regularly monitored to see if the aneurysm is stable or getting bigger. They won’t currently have any historic data if it has just been diagnosed. Mine is also 4.5 and has been stable for 5 years. If it reaches a certain size your cardiologist may recommend an operation but the timing of the operation may depend on the cause of the aneurysm .I am allowed to do pretty much any exercise other than weights or high intensity exercise but you need to take and follow the advice of your doctor . I also need to make sure my blood pressure is not too high and have been prescribed blood pressure tablets. Again one for your doctor . . My experience of the NHS heart care is that it is really good but it can take time to get appointments and tests and the admin is not always brilliant. So make sure you follow up if you do not hear back or there are any delays. Stick to NHS websites and BHF websites. And try not to do too much dr googling however tempting. The BHF nurse helpline is also really good if you want to talk to someone about your diagnosis. Details on the BHF website . Best wishes and I know it is really hard but try not to worry too much

[Milkyuk in reply to Lexi72]

Thankyou so much, I'll try to stop worrying now 😁

[Lexi72 in reply to Milkyuk]

The other point I should have mentioned is that once you get a settled diagnosis younshoukd have no problem obtaining life insurance it just costs more. But until you have the diagnosis most insurers won’t insure you. Also try (unlike me) not to put your life on hold it could be years , if ever , before you need anything done. Carpe deum

[Milkyuk in reply to Lexi72]

I've not actually been "diagnosed" as such yet. I took part in a local "lung health check" and it was found on the scan. Since had a second scan but not heard anything yet. I received a phone call from my local GP surgery after the first scan but she didn't really explain anything to me. Until I had the scan I'd never even heard of taa's so I obvs went to dr Google!!! As you would.. Thanks for chatting to me, it's helped me a lot and I'll keep you informed as I progress.

[Rosie1066]

🩲HI, I have an AAA of just under 4.0 which is monitored annually along with my aortic valve replacement (I was born with a bicuspid valve) and it hasn’t got any bigger in the past fourteen years. Sometimes they stay stable for many years. They won’t even consider operating until it reaches 5.0 . I live a perfectly normal life and, although it’s always in the back of my mind, I’m not worried about.

[Cliff_G]

Milkyuk,

Apologies for delayed reply. A few things to add.

Firstly, some people get confused between thoracic and abdominal aneurysms. If someone says AAA, that is Abdominal Aortic Aneurysm, and not at all the same as a thoracic aneurysm, TAA. Although both of the aorta, the two areas have different structures and TAA and AAA are different diseases. However, some people refer to an ascending aortic aneurysm, hence the confusion with AAA. Whenever you're reading about aortic aneurysms, make sure you are clear which is which.

Secondly, it's good that your aneurysm has been found. This means you're already a winner. Aortic disease is asymptomatic until the point of dissection or rupture, at which point things get tricky! So now you can be monitored and should avoid anything severe.

The usual monitoring for aortic aneurysms is via Cardiology departments. This is ok to a point, but it is increasingly recognised that the aorta is an organ of its own and has its own special knowledge requirements. No Cardiologist, unless an aortic specialist, will usually be fully up to date with the latest developments and thinking - often relying on national Guidelines, which are inevitably published somewhat after advances become known. So my advice to anyone with an aortic aneurysm is to get under the care of a specialist aortic centre. In the UK, these are such as Barts, Liverpool, Southampton, Bristol, Papworth, and others. At these you would be under the care of a team including cardiothoracic surgeons, and they will know about other referrals you might need such as genetics.

The other things you can take action on yourself are to look after your blood pressure, know what it is with a home monitor, and work with your GP initially, to ensure it's under control, and this means 120/80 or below, *not* the NICE/heart attack/stroke prevention figure of 140/90. See aorticdissectionawareness.o...

Also, gentle exercise is good, but nothing strenuous.

From my own experience, where I knew I had an enlarged aorta but completely failed (for various reasons) to tell the A&E folk about it when I dissected unexpectedly, what I also always say now is for people to wear a medical alert bracelet/pendant so if something unexpected does happen, the paramedics /A&E cannot miss the fact that you have an aortic aneurysm. Also worth discussing with your cardiologist or specialist aortic centre what your "emergency pathway" would be, i.e. where you would need to go to get the right level of treatment.

There's precious little good information onthe internet on managing aneurysms. Re. my comment on infrequent updates to national Guidelines, in fact the European Guidelines were updated earlier in 2024, and you can find it (amongst others) linked at aorticdissectionawareness.o... It's quite a big and technical document aimed at doctors, but you should be able to zoom in to relevant stuff such as section on Aortic Teams on p15 to 17, then Chronic Dilatative Aortic Disease on p32 to 35 (page nos are in the pdf version).

Very best wishes

[Teddy2022]

Hi I was diagnosed with a 4cm Ascending Aortic Aneurysm in February this year during a kidney cancer surveillance CT scan with contrast. I saw a cardiologist a month later who didn’t seem in the slightest bit concerned. I told her my mum died of one. She was operated on but died with a massive cardiac arrest in hospital two weeks later. She was still not concerned. She said I would be booked in for an MRI in two years and that was that. She did increase my Ramipril to 7.5 ( I had an NStemi and stent in 2021). Nothing was mentioned about not doing strenuous exercise at all. I felt a bit of a nuisance to be honest at the appointment. She couldn’t understand why I was worried! I just hope it doesn’t get any bigger but who knows eh?

[Cliff_G in reply to Teddy2022]

With family history, you're absolutely right to be concerned. Although MRI in 2 years is probably about right, imho. But I really don't like it when doctors decide whether you should be concerned or not and close down the discussion. I presume they do this so as "not to worry you", but deciding my 4.6 cm aneurysm only warranted further monitoring, and not having the full conversation about risks and management didn't do me any favours when I dissected at 4.6 cm.

See if you can get referred to one of the major aortic centres.

[Teddy2022 in reply to Cliff_G]

Thanksso much Cliff, how do I get referred to a specialist centre ? Angie

[Cliff_G in reply to Teddy2022]

First, find out where you'd want to go (where are you based?) then look at the NHS right to choose web pages (I'm not personally sure how it works) and finally discuss with your GP.

nhs.uk/using-the-nhs/about-...

[Teddy2022 in reply to Cliff_G]

Thanks Cliff I live in Hull. My husband was talking to me about it last night and we aren’t prepared to wait two years for an MRI. We don’t mind paying private. My blood pressure is up and down due to severe anxiety as well. Which hospital do you recommend? I have read all about your journey and really trust your advice 🙏

[Cliff_G in reply to Teddy2022]

I'll ask around and get back.

[Teddy2022 in reply to Cliff_G]

Thanks Cliff

[Cliff_G in reply to Teddy2022]

Sending you a private message...