My family on my maternal side have this problem and my Nan, who died at 62 had 3 sons and my mum. Her youngest son is 74, my mum is 73. Both have been medicated for high cholesterol and bp since early 40 and had surgery but are the first members of that line that has lived past early 60’s. Anyway I was diagnosed 13 years ago by chance as I needed a CT scan for another reason. It was measuring 2.7cm and no symptoms apart from occasional chest pains that I had since I was 11 from what I can remember. Back in 2020 I had an echo that showed it to now be 4.2cm. In 2021 I went to the doctor because of headaches and found my bp was 240/140. That was finally reduced by 10mg ramapril, 10mg Amolodipine and 2.5mg indapamide. Just before Christmas I had a mild chest ache that started on Wednesday night, Friday morning I phoned gp and spoke to a nurse practitioner, long story short she sent me for my routine bloods and asked cardiology to do my follow up from 2020. ( a year late as I was lost in the system) my cholesterol came back high and the same nurse phoned told me, I asked what meds I’m going on, she said no change your lifestyle (hadn’t asked what my lifestyle was) reminded her about aorta and my family history she said change your lifestyle. The only thing I could change was now eating brown rice and pasta as I’ve had a healthy heart diet since I was conceived. Since Xmas I have had chest ache 95% of the time. I no longer can walk at pace without getting pain and breathlessness (not great when your late for the school run), I can’t lift a shopping bag without a little tug on the heart area, I’m so tired all the time and I have had an irritating cough which gp changed ramapril for cardesartan coughs improved but not gone. Had my echo and it’s now 4.8, having Ct scan next week. Cardiologist doesn’t know of any of these symptoms yet as gp hasn’t reported back and I’ve not spoken with him in 2 years. Once I have the Ct scan they are arranging an appointment. In the valve clinic. My thoughts are what happens nexts am I going to have to live my life like this waiting for it to get to 5.5 and if so what do I do. I don’t feel able to pick a basket of washing up and rely on my children to carry for me, my youngest is 8. Has anyone else had AAA that caused symptoms like this. I do not have marfens syndrome and I have a tricuspid valve. So I’m sure cardio are going to leave it till 5.5. Any guidance would be much appreciated.
Ascending Aortic Aneurysm and dilated... - British Heart Fou...
Ascending Aortic Aneurysm and dilated root
hi Madbat. This must all be v worrying, and difficult for you. But your post does sound reassuring, that a scan is being done, and the Cardio will then see it.
I hope you get a quick response and your questions answered.
Do explain the demands on you in your busy family life. The health needs and obligations of a busy Mum are very different to a much older person, so I hope they take account of that in their decisions.
Do let us know how you get on.
Thank you I will. I also work full time, luckily a mentally heavy job rather than physical. I’m just concerned that cardio aren’t that worried about seeing me as they have no ideas of symptoms just size and it’s not 5.5 yet. I might try and go behind the doctors and once Ct scan is done, phone cardio department and ask for a quicker appointment.
I also have this motion nausea feeling now. It’s weird sometimes when I’m moving I suddenly feel nauseas and start heaving. Sometimes resulting in being sick sometimes not. Have no idea if this is heart related or just something weird.
Don't wait for the GP; phone your cardiologist's secretary now and ask her to tell him your symptoms.
my late husband had AAA and he had no symptoms what so ever until he just collapsed in front of me one day saying he didn’t feel well. Never had any chest pains or anything.
Can you bear to wait till the CT scan is done? It may show progression, and you’ll see the Consultant, but if it doesn't I might try and enlist my GPs support, explaining that you cant manage a pretty normal but demanding home/work/family workload and get him to help you. They might check whether it could be anything else causing your symptoms
I will yes. I think I just need cardio to have all the information. The high cholesterol, the symptoms, the measurements and see what they say. I just wondered if anyone on this page had had symptoms (probably from valve) and what happened and how they dealt with it. Thank you for the reply x
Hi Madbat,
I can understand your worries. I was monitored for an enlarged ascending aorta for 20 years and unfortunately eventually dissected age 62, a little below 5 cm. My BP was high - around 160/100 and waiting a hypertension clinic, and I probably had an aortic ulcer which tipped the balance.
My main advice to you is, particularly as you have a family history, is to get reviewed by a major aortic centre. The latest American guidelines have reduced the intervention diameter from 5.5 to 5.0 cm for surgery at a high-volume centre, but that's for cases of no connective tissue disorder and no familial history. As I think you have already found out, the intervention diameter is usually reduced in those cases. Also, if you need a valve operation anyway, they would usually do the aorta at the same time.
Your high cholesterol is of concern as many aortic events can be exacerbated/accelerated by plaques (as was mine). So keeping your BP low and dealing with the cholesterol is important.
Your tiredness won't be the aorta - that's (almost always) asymptomatic - but will be the valve. That may give you an earlier aortic surgery.
The other thing to do is to read up and know as much as you can about your situation - you've obviously done some of this already. As far as that's concerned, I'd mention that AAA usually means Abdominal Aortic Aneurysm, so make sure you read up on thoracic aortic aneurysms.
Best wishes for your CT scan, if they say afterwards they are going to wait until 5.5 cm, ask why not earlier, because of your valve, your family history and your comparatovely ypung age for 4.8 cm. Also be aware that the whole science of intervention diameter is purely a statistical assessment and not in any way something accurate.
Thank you for your reply. I have taken it all on board. My cholesterol is a concern and even bigger concern when the doctor said change lifestyle without asking about lifestyle and when I spoke about my family history of high cholesterol she said that was irrelevant and change my lifestyle. I must say I could probably do with loosing maybe 2 stone. I had 6 children and never totally lost all the weight inbetween but I’m certainly not someone who at first sight you could think bad lifestyle. My Bp is fully under control and has been for 2 years luckily. It took 6 months to get the right amount of different meds but has been fine ever since.
I know the aneurysm is usually non symptomatic and the symptoms are likely to be the valve. I just wondered if anyone on here had had valve symptoms that triggered them to have it replaced earlier then the waiting till it was a certain size. Thank you again for such good advice. Hopefully the CT scan will get me to the cardio sooner rather than later and they can have the whole picture and decide.
Hi again. You could raise the issue of getting a Lipids Clinic referral with your GP. We couldn't get mine under control until I'd seen a specialist. Along with the usual blood tests, he did one called Lp(a), Lipoprotein a. It is a cholesterol-like compound which also contributes to atherosclerosis. Even if you are positive for a high level, there's no current treatment for it apart from getting your normal cholesterols under good control. However, it is often familial, and there is evidence that high levels are associated with aortic valve and/or dissection, so it could be a further indicator of your risk level. Normal is, iirc, 0-25, elevated is 25-50, and above that it is of concern. ....Mine was 205!
I’ve just realised I put AAA on my original post. That was just lazy typing and not realising you can get abdominal. Mine isn’t there it’s all heart orientated.
There are definotely too many aaaacronyms in aortic medicine!
I have a dilated ascending aorta, diagnosed 5 years ago, also with a tricuspid aortic valve, currently at 4.8cm. However, my blood pressure and cholesterol are at very healthy levels, my valve is working well, and I don't have a family history. We're all different ...
I strongly agree with Cliff_G that you do need to find your way to a cardiologist in a major aortic centre, if you aren't already at one.
You have said that you don't have Marfan, but have you had genetic testing for the other conditions now linked to aortic root/ascending aortic aneurysms?
As you are 47, any cardiologist should be able to refer you for this, though I found that it only happened when I was referred by a general cardiologist to a specialist in aneurysmal disease. That was also the point where I had the first complete scan of my aorta (ascending through to abdominal) and the arteries in my neck.
Although my own genetic tests all came back negative, my consultant (and I) remain convinced that my own condition is genetically based, and my surgical threshold is therefore 5.0, not 5.5 cm. The neck scan gave us a clue: my arteries there are tortuous (abnormally long and looped); this has been reported in a number of the genetic aortic conditions. But without the specialist referral, no-one would have looked ...
In relation to your medication, it's obviously most important to bring your blood pressure under control. Whether or not it had anything to do with the growth of your aorta, having a dilated aorta means that we need, if anything, to aim lower than the rest of the population. That said, I'm particularly glad that you are on candesartan, because drugs in that class may help reduce the risk of aneurysmal dilation and dissection. I am on low-dose irbesartan for that reason, even though my BP is normal. Beta blockers are also recommended in current guidelines for treating aneurysmal disease, though whether that is right for you is something to discuss with a specialist.
In relation to your uncomfortable and worrying symptoms, I agree with Cliff they are unlikely to be due to the aortic dilation, but this is definitely something to discuss with a specialist.
thank you Julian. How do I get a referral to a major aortic centre. I am in Wiltshire and not sure there is one near. Cardio know about family history but have never pursued it. It’s just put down to this is in her genetics keep an eye and repair it before she drops.
You saying about neck I can remember when my nan died (the aneurysm burst) something was said about neck arteries and blocked arteries in her neck.
Thank you again for the great advice.
Bristol Heart Institute would be my top suggestion, looking for a referral to their Adult Congenital Heart Disease team. They provide a regional service for the South West
The way I got to my specialist was by asking for a 'second opinion' on my condition from a surgeon, but I think you could start by asking your current cardiologist for a referral to an aortic specialist or, if they're not helpful, put it to your GP that you think it's time for a more in-depth assessment.
Hi Madbat. I think the two nearest top centres to you are Bristol and Southampton. Both are excellent. And I think in England's NHS there is a choose-and-book system for tertiary referrals like this. (I'm in Scotland so not personally familiar with it). I found a few sources of info by searching 'NHS choose and book'.
Yes, Bristol or Southampton. A good name is Geoff Tsang at Southampton. I don't know any names at Bristol, I'm afraid.
Southampton would be the other regional centre to look at: I'm biased towards Bristol because of the surgical options they offer, but have met staff and patients from Southampton and recognise there's a lot of expertise there.
totally agree with Julian and Cliff who know their stuff. I was just around 5.00cm TAA and had mine done.
ah lovely. Could I please ask why they did you at 5 and not 5.5. Just interested in scenarios x
hi madbat, I have a bicuspid aortic valve which increases risks. I did the research abd was amazed to find that based on American data, 60 per cent of dissections occur below diameter level of surgical intervention. So I advocated for intervention once it was definitely 5.00 although as I say statistically there’s probably not a huge difference . The American guidelines suggest a definite hinge point around 5.25 cm as well. Hope this helps.
You need to be hassling them every week! My mum had an aortic aneurysm but was 79 nearly 80 when hers went. My elder sister had been back n forth to Oxford , waiting around and no one doing anything. She was 70. My lady GP said to me that I needed to get checked when I was 60 as it can run in the family. I’d mentioned this to my consultant cardiologist and he sent me immediately to be checked, I was 55, all was well. Then around 60 I spoke to my lady GP and she sent me for another, which was ok.
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