Thoracic Aortic Aneurysm

Hi everyone. I'm a 76 year old female who had a 5.3cm aortic aneurysm found last October during a CT scan for multiple Pulmonary Emboli. I've never been in hospital in my life and I'm so scared of open heart surgery, particularly at my age. Is there anyone out there who has been through or is going through the same sort of thing? I'm due another CT in about 10days but will have to wait a further month for the results. Anxious doesn't begin to cover it!

[Rhinos67]

Hi

I don't have any experience of this, but I'm a member of a Facebook group, UK Aortic and Heart Defects Pre and Post surgery.

Maybe somebody in that group has been through it and could reassure you?

Sending love

Joanne

😊

[Hidden in reply to Rhinos67]

Thank you. Have applied to join that group.❤️

[Vanilla88]

Hi, I have this condition, I am 55 and measure 4.9 cm two years ago I am waiting for results of a scan in January to see what it measures now.

Different countries have different trigger point sizes for surgery, in the uk there is no referral for surgery until 5.5cm.

Mine was diagnosed in 2019 and has remained relatively stable since then. It’s likely you will now receive regular monitoring of your aorta with scans.

Hypertension should be well controlled with this condition so if your not monitoring your blood pressure at home it could be a good idea to do this and record the readings so that when you speak with anyone about this you can give them a good picture of your blood pressure.

Not everyone with this has to have surgery so don’t worry about this as it’s not necessarily something you may have to consider.

Best wishes

[Hidden in reply to Vanilla88]

Thank you. I'm a retired senior nurse so the knowledge probably makes things worse! I also have COPD so am a poor candidate for OHS. Have a repeat CT next week followed by cardiology appointment mid May. Am going to discuss TEVAR with them. Pretty sure my nearest centre doesn't offer it but probably worth asking about a referral.

[JulianM in reply to Hidden]

TEVAR may be an option if your aneurysm is in the descending aorta, depending on where exactly it is. In the ascending aorta, it is very rarely done because it is unlikely that there is any usable landing zone to either side, among other reasons.

[JulianM in reply to Vanilla88]

I'm younger (currently 64, diagnosed at 59) with a 4.8cm ascending aorta and no other major health conditions.

I'm in the UK, monitored in London at a leading centre and would be offered surgery if or when my aorta goes over 5.0 cm, even though all genetic tests have so far come back negative.

If people have high risk genetics (Marfan, Loeys-Dietz and some others) then surgical thresholds in the UK are even lower.

The most recent international guidelines, last year, from the American College of Cardiology and American Heart Association, say it is reasonable for major centres with multidisciplinary aortic teams to offer surgery at 5.0 cm. In the absence of any specific UK guidelines, the NHS may and in my experience does refer to international ones.

Another member of my family (not genetically related to me) also has an ascending aorta of a similar size; they are older, less physically active, and these are relevant factors. Although they have a sibling who went through preventive aortic surgery, they may never need it whereas I do think it likely I shall.

[RoyM]

Good morning. I am in a similar position to yourself except I am male and 76 . My AAA was found by accident 4 years ago. I was shocked and quite worried when I was first diagnosed but then realised I am quite lucky that the Aneurysm was found, now I am monitored surgery (if indeed it will be needed) can be planned and therefore avoid any emergency event which sadly in certain cases can be very very serious. My Aorta has remained stable at 4.9cm for at least the last three yearly CT scans. Obviously, I wouldn't choose to have this condition but at least I am being monitored so hopefully avoid any emergency situation. Yes, it is major surgery but to the surgeon it's bread and butter, I am at present attending the Liverpool Heart and Chest specialist hospital. Good luck. Roy

[Hidden in reply to RoyM]

Thank you. Think you're lucky being in Liverpool , it has amazing reviews. I'm in the East Midlands. The worry for me is that I was at 5.3 last October with another CT due next week.. I know that with COPD there is a greater risk of dissection/rupture.I had an echo about 3vweeks ago and when the sonographer finishes and advises you not to sneeze or cough it's not exactly comforting! Good luck to you as well.♥️

[RoyM in reply to Hidden]

I understand your concerns...I don't actually live in Liverpool I decided that the expertise available in LHCH was well worththe 150 miles round trip I have whenever I attend an appointment. Is that not something you would consider.? Take care. Roy

[Cliff_G in reply to RoyM]

RoyM , Hidden ,

Both, please be aware that AAA and TAA are different conditions, though superficially similar, and you need to ensure you use TAA-appropriate information.

I can understand your concern Hesketh. I had an enlarged aorta for 20 years and no-one really saw it as critical unless it got bigger. In the end I dissected at age 63. I am now 68 and doing ok. But I can vouch that a planned operation is hugely better than an emergency one. From that perspective it is very good that your aneurysm has been found.

I trust that you will get good advice. If they are discussing operating, ask them where that would be done and whether it is a major aortic centre and who would do it. Strong data says that the more operations that a particular surgeon does (absolute minimum of 4 per year, but the best are doing one or two a week), and if the centre is a "high volume" centre, then the outcomes are significantly better. Also ask how you would get there - make sure they give you a transfer plan.

Age is as you say not on your side as the incidence of problems is strongly related to greater age, paper published just last week. The "old" criterion for deciding on surgery was at 5.5 cm. This paper confirms the reduction in an "average" case to 5.0 cm, so you're already qualifying. However, this paper also shows a strong relationship with age, and from what I can glean from the graph there, at your age the criterion should be somewhere below 5.0 cm.

A few things to do:

Make sure you and your doctors get your blood pressure down, *very soon* and lower than the usual NHS treat-if-over-140/90. A recent paper reported that the risk of dissection increases above 110/75. Unfortunately, this information is not well known at present outside specialist aortic medicine.

You'll probably be put on beta blockers and/or ACE inhibitors/ARBs. These help slow the deterioration of the aorta in Marfan and similar patients and are believed to do similar in non-Marfan people. These will obviously also help your BP.

Finally, get yourself and wear a medical alert bracelet/pendant giving your thoracic aortic condition on it. I wish I had had this advice as I was initially treated for heart attack. Dissections are known as "the great masquerader". AD is a very survivable condition but you need prompt and accurate diagnosis and treatment.

My very best wishes to you.

C.

[Hidden in reply to Cliff_G]

Thank you for all that. Because I had multiple Pulmonary Emboli I am on anti coagulants for life now so a dissection or rupture would be extremely bad news! As far as I know there is no connective tissue disorder in the family. My nearest acute is Glenfield which is one of the top rated for aneurysm surgery but I'm pretty sure they don't offer TEVAR which, if I'm a suitable candidate, would be safer for me. I have a medical alert on my phone. I have had only one brief (15 minute) cardiology appointment with a registrar about 3 weeks after my discharge in November following my admission for PEs. Have to say I was very unimpressed, so much so that I put in a complaint and said I did not want to be seen by this doctor again as I had no faith. I know from the comments in his post clinic letter that he hadn't listened to me. That in itself increases my anxiety. After a lifetime in the NHS I never thought I'd see the day when I put in a complaint! Thank you again for your support, it means a lot.

[Cliff_G in reply to Hidden]

You look to be on top of the situation, which is good. We have to be our own advocates.

Re. the Med Alert on your phone. So did I. I had it on my phone, also a card in my wallet, also my family were around when it happened and knew my cardiac history (AF). In spite of all that, everyone including me was so shocked at my collapse that no-one remembered these reminders. After I had been stented for a heart attack and the pain continued, I was sent to CT. Only on seeing the white doughnut did I recall my aortic issue (because of previous CTs) and was able to tell them, though by then they were suspecting it.

I always give the advice that the Med Alert bracelet/whatever needs to be unmissable by a Paramedic.

[2islandboy in reply to Cliff_G]

Brilliant posting Cliff !! You nailed all the details. It's critical to be under the care of a VERY experienced surgeon. I have to drive 6 hours to see my surgeon, the chief of the Division of Cardiac Surgery at Harvard Medical School, MGH in Boston. He does this type of surgery every day! My TAA is at 4.3cm and I have been able to reduce it through BP control, weight reduction and exercise. I am 72 and my surgeon says that I may have had this aneurysm for decades. I have moved very heavy machinery all my life, not knowing about my aneurysm until three years ago. Please make major changes to your lifestyle and seek help from a surgeon, who is tops in their field.

[RoyM in reply to Cliff_G]

Thank you for your response Cliff and yes I am aware of the differences in both conditions. Personally, my Aneurysm is of the ascending variety which is slightly different but includes the root measuring 4.4cm and the arch which measures at 4.8cm. My surgeon considers the benefits of surgery at this time do not put weigh the risks. I suppose I am slighty surprised that the measurements have remained static for a number of years. I also have a bicupid aortic valve which may account for the root Aneurysm. I don't have any symptoms but I am acutely aware that until or if it dissects or even worse ruptures there is usually little symptoms. My surgeon also suggests that a resting blood pressure of 120/70 is a good target. Thanks for your reply. Roy

[Cliff_G]

p.s. as you're in the East Midlands, Papworth in Cambridge is a top centre.

[Coper10]

Hello, I was found to have a thoracic aortic aneurysm of 5.8cm. I had planned OHS to repair it 2 years ago and had replacement aortic root, valve (mechanical) and ascending aorta. Surgeon was brilliant along with the cardiology team. The operation is major and recovery is slow but steady. I returned to work on a phased return 3 months later and 2 years on, don't feel I have significant restrictions on my life. I have subsequently been found to have Marfan syndrome. As has been said, planned surgery is a better option than emergency. There is a lot of useful info available, along with support such as this forum. Write any questions down to discuss with your consultant - it all helps you feel you have some control in an anxiety provoking situation. I wish you all the best 🤗

[Hidden in reply to Coper10]

Thank you. It's always good to hear success stories.