Aortic Aneurysm

[Kenny1950]

Just been told I’ve got aortic aneurysm and been referred to Liverpool Heart and Chest clinic. Can anyone simplify what that means?

[Isobel1]

Hello, did they tell you in which part of your aorta, you had the aneurysm ? Presumably somewhere in your chest ?

It means the aorta has widened & got thinner at that point. They don't tend to operate until it's more than 5 cm across . They just monitor it.

Try not to worry if they do decide to operate . They usually replace that part with a Dacron tube. I had a thoracic aneurysm operated on 13 weeks ago.

It's a routine op for these surgeons. I've done really well & made a full recovery, and I'm over 70 !

[Kenny1950 in reply to Isobel1]

Thanks for that, Isobel. I was in the car when they rang and didn’t really take it in. Just felt a bit shocked as I wasn’t expecting anything like that. I’ll wait for the letter. Cheers

[Isobel1 in reply to Kenny1950]

I know, it is a shock, especially when it's anything to do with your heart. Try not to think ahead too much. Have you had any tests yet ? The best of luck, perhaps they'll just monitor it for now, but you're in the best hands & they'll make sure you're alright , whatever they decide to do.

[Alisbabas]

Hiya I have one too that is being monitored and is the aortic root at 4.0. How did they come to find yours?

Ali

[Kenny1950 in reply to Alisbabas]

It was a heart CT scan for something else. Came as a real shock as wasn’t expecting it.

[RoyM]

I think that is how most of AA are found , me included. I am being monitored at Liverpool Heart and Chest hospital. My Aorta aneurysm is of the ascending variety, and about 3 years ago was found quite be accident and measured 4.6 cm luckily up to now it hasn't changed much and I continue to be monitored yearly. Although initially I was monitored twice yearly. I now just tend to get on with life and very rarely think about it..I am careful about lifting and try to maintain a healthy weight and regularly monitor my blood pressure...my next hospital visit is December this year. Good luck Roy

[Kenny1950 in reply to RoyM]

Thanks for that, Roy. Really helpful. Good luck to you, too.

[Oboebec]

Another fellow TAA holder here.... Good you have a referral - they'll go through in detail what it means & what, if anything, they'll do. Lots of not lifting & keeping BP down ahead...

[Kenny1950 in reply to Oboebec]

Thanks for that.

[JulianM]

As others have said, the two key questions are exactly where it is and how large it is. You also need to know about your aortic valve: is it structurally normal and is it working properly? Your specialist will assess this, probably with an ultrasound scan at your first clinic visit.

The other key issues, which take much longer to assess, are whether it is stable or growing (average rates are about 1mm a year, so it takes time to find this out) and if there is a genetic factor that may increase (or reduce) the risk of serious harm. Your family history is important and also any evidence of connective tissue disorders. Genetic tests are available, but often come back negative even when there's clearly a genetic factor, and take many months to do properly, so don't pin too much on them.

I was diagnosed as a volunteer on a sports cardiology project in 2018 with an ascending aortic aneurysm at 4.6 cm; it's now 4.7-4.8 cm and I'm being monitored by an Adult Congenital Heart Disease team who would advise operation at 5.0 cm in my case. If there are genetics or family history that raise the risk, that threshold could be lower; if it's thought to be more related to age and cardiovascular condition, it could be 5.5cm.

It's very individual and you need to see a specialist: the good news is that you are on the way to one: Liverpool is one of the leading centres in this field in the UK.

My initial reaction, like yours, was shock. I knew hardly anything about aortic disease and I am still on a learning curve nearly three years later.

The cardiologist who diagnosed me did a first rate job of explaining the diagnosis and its implications, In my case, withdrawing from all the sports competitions I'd planned to take part in, for a start ... and sitting down with my manager to agree on lifting restrictions. It was great that she emphasised staying physically active (in a moderate way) and the positive message that knowing about the risks makes them much more manageable.

I still think there is seriously inadequate information for patients from the NHS and other bodies. It still shocks me that there is no advocacy group with a focus in this area, though there are some great support groups for aortic dissections, specific connective tissue disorders (such as Marfan), and valve disease.

Surgery is daunting when the condition itself has no symptoms and you feel basically well. It may not be needed for years, or it might be needed right away: it all depends. Replacing the aorta is major surgery but the surgeons who do it are very highly skilled, and if it is done as a planned operation the risks are much lower than when it's done in emergency.

Other options are available: I'm very interested in PEARS (exstent.com has full details) but it's only relevant for aneurysms in the root and ascending aorta and doesn't have as much long-term data as some cardiologists and surgeons would like. Though, in my opinion, what data is available is very positive.

Best of luck!

[Oboebec in reply to JulianM]

I totally agree Julian - my diagnosis was last Feb & I've yet to have much more info than 'don't strain'! There's a definite line of it in my family, so I'll be pushing for genetic tests soon. It seems if you're near a good centre, you're well cared for, but outside of those no-one particularly knows about them!!

[Kenny1950 in reply to JulianM]

Thanks. That’s really useful. I was screened for this 5 years ago and was told everything was fine. Clearly, it wasn’t or has it occurred recently? As Julian points out, there are many questions to ask. Thank you.

[Isobel1]

It could well have developed over the last 5 years . You seem to have been given lots of good advice , and I hear the hospital you're being referred to has an excellent reputation .

[Kenny1950 in reply to Isobel1]

Yep. Got to be positive.

[HeartAnon]

Hi there. I had emergency surgery to remove an ascending aortic aneurysm in October of last year. Goodness knows how long it has been there and growing. It was only because my aorta dissected above the aneurysm that they found it. The good news is that you're on their radar and being monitored. If you need surgery in the future, they can plan it. The team at LHCH are incredible - the standard of care I received has been unbelievable. Post-op, the follow up has been amazing including genetic screening etc. Good luck, stay strong and keep the faith.

[Kenny1950 in reply to HeartAnon]

Thanks for that. Really reassuring.

[Coper10]

Out of the blue, in January I was found to have an aortic root aneurysm measuring 5.8cm. This came as a total shock as I’d had no symptoms. I had surgery in March and am recovering well. The cause is still being looked into but I am just so thankful it was found so something could be done. It is positive that yours has been discovered so you can get monitoring/ treatment as appropriate. I wish you all the very best.

[Kenny1950 in reply to Coper10]

Thanks for that.

[seasider18]

Were you invited for a scan as they now do for men over 65 or were they checking something else ?Mine was actually found when I was 70 in 2004 and they were scanning for gall stones that I didn't have. It concerned me then when it was 3.1 cm but it is slow growing and is now 4.3 cm and they say will probably never need treating until I'm over 100 I met a man who had the surgery when he was 93.

nhs.uk/conditions/abdominal...

[JulianM in reply to seasider18]

The scanning programme is for abdominal aortic aneurysms only. It doesn't look at the thoracic aorta.

Thoracic aortic aneurysms (and specifically those of the aortic root, ascending aorta, and aortic arch) are rarer than abdominal ones, have different risk factors - for example, the gender balance is more equal - and are treated by different surgeons.

There is no national screening programme for these conditions and much of what is said about abdominal aneurysms is not relevant. There are moves towards setting standards for screening relatives of known cases, given the strong genetic patterns in thoracic aortic disease. However, most cases are detected incidentally when people are scanned for other reasons.

The NHS website's failure even to have an entry on the subject is, in my opinion, shameful. It's precisely when people get unexpected diagnoses of unusual conditions - though we're still potentially talking about tens of thousands of people in the UK - that there's the greatest need for clear and authoritative guidance.

[Kenny1950 in reply to JulianM]

Gosh. Thanks for that. I didn’t even know there were two types of aneurysm. Which is the most dangerous?

[JulianM in reply to Kenny1950]

The most dangerous one is the one that isn't diagnosed, because of the risk that severe (usually off the scale, stabbing, mobile) chest pain will be misunderstood as a heart attack and dismissed when tests for a heart attack come back negative and the pain fades away. In the worst cases, people get sent home and then die when the injury progresses.

That's why the Think Aorta campaign for emergency medicine is so valuable - thinkaorta.org has details.

If there's reason to suspect a dissection (like a blister forming inside the aortic wall), then it's important to get a CT scan and avoid blood thinners until there's a definite diagnosis.

Once you know this, and if your blood pressure is normal and well managed, the risk is likely to be very low. But that's for your specialist cardiologist and their team to assess and advise you on.

Dissections in the ascending aorta are higher risk than lower down, because the pressure is higher. While dissections can happen without aneurysms, aneurysms greatly increase the risk - but dissections are MUCH rarer than aneurysms. The odds are massively in your favour.

Aneurysms can form on arteries anywhere in the body, including anywhere on the aorta. The distinction between thoracic and abdominal ones is historic, and based in part on having different surgeons (cardiothoracic vs vascular) operating in the two parts of the body. The epidemiology points to a slightly different distinction, where aneurysms in the descending thoracic aorta are much more like abdominal ones than those of the root/ascending aorta/arch. The vascular surgeons are sometimes able to operate on the descending aorta, too ... Dissections can bridge both regions and require multiple, complex, lengthy, high-risk operations, which is why prevention is much better than treatment.

[Kenny1950 in reply to JulianM]

Thanks for that. I went to the docs three years ago with this ripping pain and they assumed it was just muscular or skeletal. When you google it, the ripping is clearly linked to aneurysm. Better late than never, I suppose.

[JulianM in reply to Kenny1950]

I think that's really fascinating. Dissections can and do cause aneurysms, as well as the other way around. Definitely one to discuss with your specialist, and would possibly strengthen the case for genetic tests.

[JulianM in reply to JulianM]

Three years on, if it was a dissection, it's obvious that it stabilised without intervention, but it could place you in a different category for ongoing monitoring and treatment of the dilated aorta. There's a great support group for dissection survivors called Aortic Dissection Awareness UK & Ireland, and also a newly established (breakaway) charity called The Aortic Dissection Charitable Trust, both of which may be helpful.

[Ianfoster in reply to JulianM]

I a m 86 years old have my aneurysm monitored for the last 10 years. Just under 3 years ago it was 6.1mm and has remained stable since then. Apparently I am fit enough to have the stent operation. My problem is. Should I just carry on and hope for the best as the condition at the moment is stable or go ahead with the operation. If I wait much longer the risk will be higher having the operation than just continuing being monitored. Ian F.

[JulianM in reply to Ianfoster]

Hi Ian,

It sounds like your team are giving you good and careful advice. That advice must be very specific, based on exactly where your aneurysm is - on the descending/abdominal aorta? - which then determines the risks and possible benefits of putting in a stent.

I don't know enough about internal stents (EVAR or TEVAR) to say more than that. In the end, as you say, only you can decide how much your concern about the aneurysm is affecting or limiting your life right now, and how this compares to your concerns about recovering from the operation.

You might find that talking to a nurse or someone involved in rehab after the operations would help in understanding the implications better. The BHF helpline people could be useful if you can't get direct help from your own medical team on this.

I hear there's a new support group for abdominal aortic aneurysms launching soon in the UK, hopefully they'll make a splash in the next month or two - and that may be a good point of contact for you to get directly relevant experiences.

All the very best!

[Ianfoster in reply to JulianM]

Thanks Julian. I’ve felt so relieved every time I have had a scan and been told the aneurysm is still at 6.1 mm ( since 2019 ) . But still worry whether I should have had a stent fitted earlier as I’m reaching an age when it wouldn’t be advisable. The aneurysm is abdominal and doesn’t affect my lifestyle at all. This of course is my problem……the fear of something going wrong after the procedure. I’ll do as you suggest and seek some further advice. In the end of course it has to be my decision.. regards Ian

[Kenny1950]

I was screened clear at 65. This came after a look for something else on a CT scan. Irritating!!!