Hello everyone. I am a 54 year old woman who has had an incidental finding of a thoracic ascending aortic aneurysm. I have been told it's 4.4cm and they will monitor with CT scans but that the size that an operation will be necessary is 5.5cm. The surgeon explained this involves open heart surgery. I have no family history of heart problems of any so this has come as a shock.
It all felt rather matter of fact at the time of the consultation but I have been left feeling very scared - about the growth, the risks of dissection or rupture and also the potential surgery further down the road.
I was wondering if this fear is something that others in this forum have experienced?
Thank you for supporting.
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JGiraffe
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I was in exactly your situation 4.5 years ago, when I volunteered for a sports cardiology research project, thinking I was as fit and healthy as I had ever been, only to be sat down after an echo by a cardiologist and told that my ascending aorta was enlarged - it turned out to be 4.5-4.6 cm at the time (it's now around 4.8 cm+) and she had to advise me not to continue doing any competitive sport, to avoid heavy lifting, and explained two different ways my condition could kill me. But she also said that now we knew about it, that almost certainly wouldn't happen.
As you say, this was all a massive shock.
My response to it was and remains that I wanted to know absolutely everything I could find out about it. So I am very happy to answer any questions you may have, as far as I can. You will need to get yourself referred to a cardiologist who actually specialises in aneurysmal disease, and you also qualify for genetic testing. It's important you control your blood pressure, so if you don't already have a home monitoring system, invest in one - if only to avoid being put on excessive blood pressure treatments because of clinic-based readings ...
And, to answer a couple of the questions you have already asked, and comment on what you have been told:
* Monitoring is essential. A cardiac CT scan with contrast is the best way to get accurate measurements, though they're never totally accurate, because it's an organ that is elastic and in constant motion. To limit radiation exposure, MRIs may be preferred, especially if your cardiologist (like mine) is very experienced at interpreting them. Initially, you might get scans every six months, just to rule out rapid growth, but they may then switch to every year. My own monitoring is now based on alternate years with an MRI and a TTE (ultrasound). My next MRI is in a couple of weeks' time.
* Surgery should definitely be offered if your aorta reaches 5.5 cm, though this may not happen for a very long time. However, the latest guidelines - which are already current practice in the centre where I'm being seen in the UK - say that in specialist centres surgery may be offered at 5.0 cm. I would ask: why would anyone not want to be treated in a specialist centre, where people know what they are doing? Also, if genetic testing identifies a high-risk genetic marker (there are 11 different genes in this category), it's possible the threshold would be even lower, down to 4.5 cm in some cases. It's very likely that all genetic tests will come back negative for you (as they did for me). It's still probably a genetic condition. I tell myself that the unknown genes are most likely less troublesome than the known ones ... and there is some evidence to back this up.
* The risk of dissection is low at the size you report, in the absence of a family history or a high-risk genetic marker. Provided you avoid all-out weight lifting, it's seriously unlikely. There is a recent publication from the KP-TAA study, based on medical records from 5 million people in Northern California, which is the most serious and useful attempt to put figures on it, I'm happy to post a link if you want (and can't find it). I've met dissection survivors - and learned a lot from them - and the other thing to understand is that when you know there's a risk, the very biggest danger - which is misdiagnosis - can be avoided. But dissection is definitely worth avoiding altogether.
* Surgery is especially scary when you have a condition that is completely without symptoms, and I didn't like the prospect either. I found it helped to meet people who went through open-chest procedures for heart conditions - one of them was my late father, who had bypass surgery after a heart attack, others are friends and people I've met through work. It is a huge advantage to have planned surgery, it massively reduces all risks, because you can have it done at the time when you are in the best health you can be and at a time of choice. There are also alternative options, which are likely to improve over time. I'm a particular fan of PEARS surgery - exstent.com has very full details - which, although it is open-chest, does not usually need to be on bypass machines, or at reduced body temperature, and has shorter operation times and recovery times than some of the others. PEARS isn't available in many centres, and sometimes - depending on exactly where the enlargement is, and what's causing it - it may not be a good option, but it's one to look at and ask about.
Thank you so much. I am hugely grateful for all the time you have taken to support me with this incredibly insightful information. I am going to do some research, taking into account everything you have said, and then I will post again. In the meantime, again, thank you - this exchange has in an educated way solidified the seriousness for me alongside a sense of hope that wasn't feeling, so that's made me feel a lot better!
wow-amazing response from Julian! I am just coming in to make a light noted comment here-I took part some years ago in a free screening trial at my local gp for AAA- he called a week or so later and said ‘the good news is you don’t have AAA but you do have a gallstone! You don’t need to do anything about that unless it plays up!’
Almost a year to the day it did- THE most horrendous pain which made me sweat and unable to talk, so after I had meds to settle it down I had it removed! Screening is so helpful for lots of things!
Yes, during COVID as he was under-used, an aortic specialist cardiologist in New York checked CT scans done for other reasons and found an astonishing number of people with unreported aortic issues, with a few already meeting the criteria for intervention. Bristol hospital (among others) do a lot of CTs for suspected ADs and also find a bunch of other stuff, if my memory serves me correctly, on 40% of the scans. My enlarged aorta was found on an echo for my AF
One key issue I should have asked about is whether you've had an echo report on the state of your aortic valve: it does make some difference, whether the valve is bicuspid or not. For example, the genetics are a bit different and maybe less relevant ...
My brother is waiting for an aneurysm repair at the moment. The thought of this scares me - that a percentage of people are walking around with a ticking clock and not knowing until it is discovered during investigation for a completely different problem. It is also difficult to understand why men can be screened for aneurysm over a certain age but this is not so for women.There must be a reason I suppose.
The screening programme is for abdominal aortic aneurysms only. It uses ultrasound, but the equipment used won't detect thoracic aneurysms. Those abdominal aneurysms are more common in men, especially men who have smoked at some time in their lives, and are linked to other kinds of cardiovascular disease. (Sometimes, they do affect women: one of my grandfathers lost his younger female partner - the mother of two of his three children - when her undiagnosed abdominal aneurysm ruptured.) There's good information about abdominal aneurysms on the NHS website and on the BHF website.
Ascending aortic aneurysms (including the aortic root and the aortic arch) are a different disease, less common, different genetics and risk factors, and that's what the question is about.
There are well established public health criteria that need to be met before a mass screening programme can be justified for any condition, and at the moment, ascending aortic aneurysms don't meet those criteria. However, because ascending aortic aneurysms and dissections have a strong genetic element, new guidelines do support screening close relatives of anyone diagnosed with them, and there is a research project based in Leicester, supported by BHF, which is exploring how best to do this in the UK.
If your brother has an aneurysm, you (and any other relatives) should also be screened (CT/MRI scan). Genetics and a family history are one of the criteria for individual (as opposed to mass) screening.
That hasn’t been mentioned at all, not even for his own children. It’s probably a postcode lottery like a lot of other things. I’ve been waiting 6 months for an echocardiogram ( I do live in a completely different area to my brother)
If you go to aorticdissectionawareness.o... and scroll down to Genetics, you'll find the NHS criteria as to when people should be screened for aortic issues. Show this to your GP and get a genetics referral.
Thanks, first glance it all looks complicated but I’ll send the link to my brother and also mention it to my doctor( if I ever have the pleasure of seeing him again)
Strictly speaking, the guidelines (which I've linked below) do not advise screening for close relatives in relation to abdominal aneurysms. However, there is a little bit of overlap: one of the first things my aortic specialist did, when they saw me, was to arrange a whole-aorta scan to make quite sure there was no extra problem beyond the one we already knew about. If in doubt, ask a doctor. Abdominal aorta screening is cheap and simple.
And the most recent medical guidelines, which I find are the best way in to getting an overview of the condition and which papers, etc, to take seriously, are here: acc.org/Guidelines/Hubs/Aor...
Hi Julian and everyone, thanks for all this really useful information. I was diagnosed with a 'mildly' dilated ascending aorta a few months ago by chance. I am otherwise a fit, healthy 73 year old. My mother did have this condition though. My question is how do i find a specialist centre? I live near Bristol. The cardiologist I saw wasn't at all concerned that my BP was 135/85 and called that normal! And also I am not due to have another MRI for 2 years. Sounds like I should get a second opinion. Thanks
Bristol does have a major aortic treatment centre - the Bristol Heart Institute at the Bristol Royal Infirmary. However, one factor to bear in mind is that the aorta does gradually grow through our lives, so mild dilation at 73 is not the same concern that it would be at 23. Genetic testing, for example, is generally only available when people are diagnosed under the age of 60. When was your blood pressure checked? If that is what you are getting regularly when fully rested at home, I'd agree it's a little high, but if it's in a clinic, it might not be. That may be something to talk to a GP about.
JG: All excellent advice by Julian and I'd support every word. I was in a similar position but dissected (after 20 years of monitoring). I put this down largely to not being seen in a specialist centre, with all the other factors contributing.
Probably the best thing you can do right now is learn as much as you can about it. It's a shock to be diagnosed with something like this, and hard to get a handle on how serious it is or might be. Unlike my AF where I knew every paper, technique, drug etc, and with this was able to understand what should be done (eventually successfully), I didn't research my enlarged aorta at all, looking back mainly because it was symptomless. How I wish I had!
Finally, though it's a shock, it's really good that you are now being monitored. Don't worry (too much!) about the prospect of surgery, it is actually very safe now, and getting safer every year. What you do need to avoid is letting things get to the emergency stage, where things are not quite so rosy.
You might consider joining the Thoracic Aortic Aneurysm Support group on Faceboook. Lots of helpful information and support from people with TAA. People from all over the world including UK on there sharing their experiences.
Hello, I was in a similar situation aged 52, with an incidental finding of an ascending aortic root aneurysm measuring 5.8cm. I had urgent open heart surgery which resulted in a mechanical heart valve and replacement of my root and ascending aorta. The care I received from my surgeon and the cardiac team were outstanding. Nearly 2 years on, I am working, enjoying my 2 children and have a much better appreciation of life. It is lucky that your aneurysm has been found. This will enable close monitoring and any surgery if needed can be done in a planned way. I totally understand the shock you must be feeling. The idea of such surgery is huge. Give yourself time to come to terms with your situation, and note any questions you have to ask at any appointments you have. Most of all, look after yourself and be reassured that should surgery be needed, following the recovery period, you can still live a full life. Feel free to message me with any queries.
Hi, I have exactly the same, mine initially measured 4.2 cm and is monitored yearly by the hospital via a CT scan with contrast.
In the first year it grew to 4.3 cm so the hospital doctor put me on blood pressure medication (Amlodipine) and said he wanted my systolic blood pressure to not exceed 120.
2 years later it has remained unchanged. I check my blood pressure each evening to see that it is under 120.
The one thing you should do is monitor your blood pressure daily to ensure it remains low, it takes me less than 5 minutes each evening.
Hi JGiraffe. I was diagnosed with an ascending aortic aneurysm, and an aortic valve that needed replacing in 2019 at the age of 73. My aneurysm was 5.5cm. Because of Covid, the length of time between my diagnosis & operation was 6 months. I was told to take it easy & phone the heart hospital if i thought i was getting more breathless.
Although waiting for the op & the thought of the operation is scary, i came through it alright and am fine now.
I’m really grateful to find your post because I was just told something similar.
Very unnerving to hear that this condition will be monitored and the CT repeated in a year. I have a measurement of 4.0 cm. I also have severely damaged lungs so I can’t wrap my head around waiting to do anything.
I’m in the states. So I am eight hours out by time zone from 🇬🇧 but I hope to read some more of the replies that you’ve received.
I totally understand, I have the same and mine is 4.4cm too.. when I first heard I felt manic and stopped everything but over time I have excepted it and althought I try not to lift anything heavy and general look after myself keeping my blood pressure in check and attending all hospital appointments and I hope for the best.. I’ve learned a lot from people on here.. Good luck x
Hello, you have just described how I felt after my diagnosis, also completely out of the blue, 18 months ago, I hope you have by now got some information and perhaps had your surgery and are well again. The mental anguish is awful, especially at 4 in the morning! All the best !
My huband was found to have an aortic anurysm in his adobmen , his was the size of yours 3.3 but had grown bigger in a month. GP suggested he waite 3 more months for another scan. I called my cardiologist to see my husband , cardiologist said no he can't Waite another month. He was set up with a Vascular surgeon . He was so scared, would wake me up crying and would say he will die on the operating table , he sees himself leave his body during surgery and was looking down at himself. He got through the surgery. I'm going to tell you its not an easy surgery but day after day it gets better. You have to choose, do you want it to burst and kill you instantly or get it fixed and have a longer life My husband had indecision as to not have it done. Family advised him to get it fixed. It is normal to be nervouse with this condition, to think the worst. Surgery is not fun to have to have. Your not alone in your thinking. BEST OF LUCK, MOST IMPORTANTLY STAY POSITIVE IN YOUR THINKING. SURGERY IS NOT A DEATH SENTENCE, DOUNG NOTHING TO FIX THE ANURISM IS.
Aortic dissection, the main risk of not having an aortic aneurysm treated, was traditionally believed to always be fatal. This (and I speak from personal experience and from a community of over 1000 survivors) is definitely no longer the case, and hasn't been for at least 20+ years. There are unfortunately still even some professionals who think this.
AD is now very survivable, though that's not to minimise the danger involved. AD is still a difficult diagnosis in A&E and regrettably there are still late diagnoses. And a proportion, probably around 30 to 40% (we don't really have accurate figures as they can be put down to heart attack) will indeed not even make it to hospital. But if you know you have an aneurysm, you're already reducing your risk by having it monitored. Again, this is an imperfect science.
What I always say is:
* Get seen by a main aortic specialist centre. They will be up to date in what is a fast moving area of medicine. Listen to their advice, but also read up on the condition and ask plenty of questions until you are happy with your understanding
* Be aware that elective surgery is (a) much safer than it used to be, with updated techniques and (b) considerably safer than emergency surgery. You do not want the latter, again I speak from experience, although again it's also getting safer.
* If you know you have a risk, whether you're opting for planned surgery or are just being monitored, plan for the worst, hope for the best. Wear a med alert bracelet so if you have an emergency the paramedics and A&E doctors can get straight to the key issue, of your aorta. Find out where you'd need to go if there was an emergency, and know how you'd get there - it might not be your local hospital.
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