Hi, feeling a little deflated. Had my first annual surveillance CT scan with contrast in relation to the kidney cancer I had. I had a partial nephrectomy last Feb and all is well. No further indication of any spread. Thankfully it was a low grade small tumour but I am still considered high risk.When I got the ‘all clear for another year’ I was soo relieved but then the nurse said the dreaded ‘but’ word. The but being a 40mm ascending thoracic aortic aneurysm. Ironically the kidney cancer was picked up for a scan on my liver., which was also deemed fit and healthy after previous issues. Two years ago I had an Nstemi heart attack any a stent fitted to my LAD. I didn’t even know I had had a heart attack because the pain was minimal. I was told after surgery my artery was 99.9% diseased and I was very lucky to be here. After my kidney operation I was taken off most of my heart meds because of low blood pressure. I have always been worried about this as it was only low for a short time after the op. I am currently awaiting an appointment with the Thoracic consultant as I have been referred to him from my kidney consultant. This aneurysm must have occurred quickly because it wasn’t there when I had my stent fitted two years ago.
Do you think been taken off Ramipril has caused it? I am very fed up as my mother died with this type of aneurysm at 62. She had an operation to try and mend it but died two weeks later in hospital, paralysed from the operation, then having a massive cardiac arrest. She never got off the ventilator.
Sorry this is a rambled post but I thought I might have a year off from tests and hospitals but here I am again waiting for another consultation with another issue. I am 57, non smoker, tea total, slightly under weight but physically fit lady who anxiety is on overload again. Any tips, advice or reassurance appreciated. Angie x
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I found out my own ascending aorta was oversized five years ago, at the age of 59, when I volunteered for a sports cardiology research project ... and have since tried to find out everything I can about it. But I am not a doctor, and my main message is that you definitely need to discuss all this with a doctor who specialises in this area and who you trust.
40 mm is definitely larger than it should be and, given your family history, you do need to see an aortic specialist and to discuss genetic risks and options for treatment. If genetic testing has not already been done in your family, it should be considered now.
I have normal blood pressure but am on a low dose of an ARB (irbesartan, 75mg/day) as there is some evidence - primarily from people with Marfan syndrome - that it can reduce further growth and reduce dissection risk. This is another thing to discuss with a specialist.
In relation to surgery, PEARS - personalised external aortic root support - may be an option to consider (depending on your precise anatomy), which is safer than the kind of surgery your mother underwent. There are full details, including a list of UK NHS surgical centres which offer it, on the website of the company which makes the customised mesh supports that it uses. See exstent.com for further details, including many patient experiences.
Thank you Julian for your reply. The gent I have been referred to is a Consultant Thoracic Surgeon who according to his bio specialises in thoracic trauma and minimal invasive surgery including robotic. I am waiting for him to look at my notes etc and then hopefully I will get an appointment in his clinic. That’s what his secretary said to me yesterday. My doctor has put me back on Ramipril again, just one 2.5 mg once again to be reviewed in a week ( I was on two a day). She wants to see a week of BP readings first. I live in Hull so I don’t think those clinics would be an option. Does everyone who has this condition need an operation? I will chase up my appointment next week but all I have in my mind was how terrible the experience was for my mum. She lasted two weeks in hospital. We had just got over the fact she had been paralysed during operation when she died. This was a long time ago but it’s hard to forgot. I was there when they turned off her life support.
My own aortic specialist works within an adult congenital heart disease team. The surgeon you have been referred to may or may not be the right person to see: minimally invasive surgery is more relevant to the descending aorta and possibly the aortic arch, than to the ascending aorta.
No, not everyone needs surgery: it depends on how large it gets, but when there is a family history of dissection, that can count for more than absolute size.
I'm not pushing PEARS at you, but note that the nearest centre to you is in Newcastle.
Hi, I fully understand how you feel especially in relation to your mum as my husband died indirectly from the result of a descending aortic aneurysm. I myself have an AAA which I have had for at least ten years and, so far it is stable and hasn’t grown any larger but, as I was born with congenital heart disease and have had an aortic valve replacement plus I now have HF and a family history of heart disease, I am monitored annually. AAA often stay stable for many years. They won’t operate on them until they get to 5- 5.5 cm. Also, your height is taken into consideration when being assessed. One of most important things is to make sure you keep your blood pressure low.
Hi Rosie and thank you so much for replying to me. I a, 5ft 2 inches by the way and weigh a coupler of pounds under 8 stone. I have coronary heart disease but it’s not terrible. I have terrible anxiety which doesn’t help does it. At least I am back on Ramipril now. I don’t know how long I will be waiting to see this new Consultant though. My kidney surgeon has done his bit by passing my file onto him. All I can do is wait eh. My mum was 4ft 10 by the way. Angie x
What a worry! Firstly, I doubt that being taken off Ramipril has caused a sudden widening of your aorta. Aortic dilation and aneurysms are generally a very slow process, over decades. Beta blockers and to a lesser extent ACE inhibitors (such as Ramipril) and ARBs are thought to slow such growth, but as Julian says, the main data is in Marfan patients.
I think it more likely that the dilation (which is not very great) has simply been missed at previous scans. I'm not sure of the history of your scans, but if you've had more than one CT scan over time (or echos, but they aren't as accurate on the aorta), then if you can get the series of scans (even if only 2) reviewed, that's an important measurement anyway, i.e. the rate of diameter growth.
Whilst 4.0 cm is not particularly large, there are a few things to know.
1. Diameter alone is not an adequate criterion for judging the risk of a dissection (being the main risk of an aneurysm there). Much work has been done over the years suggesting classically 5.5 cm is the size at which intervention to repair the aorta is warranted. In the last few years that figure has been reduced to 5.0 cm for intervention in high-volume lower-risk specialist aortic centres. However, these are simply statistical data and statistics have outliers (I am one!)
2. Your body size expressed as height means your "normal" aortic size is likely to be smaller than taller people, suggesting that intervention should be done at a smaller diameter.
3. Your Mum died at 62 of this sort of aneurysm. One important factor in this is: where was your Mum's aneurysm? If it was abdominal (an AAA) then that's a little different as thoracic (where yours is) and abdominal aortas have different structures. Either way, it does suggest there is a familial risk, and in such cases, again, earlier intervention is warranted.
Julian's advice echoes what my advice always is in such cases as yours: get yourself seen at a major aortic centre where the cardiothoracic surgeons are up to date with the latest thinking and practice. Many such cases as yours are referred to cardiology, but the problem with that is there's a referral step involved in getting from cardiology to cardiothoracic/aortic and that point in itself is hard to judge. Better to go straight to where you need to be. These centres will also be familiar with the genetics and familial risks.
I hope this helps and that you get the attention you need.
Don't worry too much in the meantime. Your Mum's experience was obviously traumatic, but I and many others are the living proof that dissections are very survivable, even, like mine, in emergency situations. Treatment techniques have advanced a lot in the past decade or so. The key thing is to get seen immediately and diagnosed accurately in the first place. To that end you might consider wearing a medical alert bracelet or pendant. It's vital that the emergency services know straight away that you have an aortic risk, as many dissections are initially diagnosed as heart attacks (as mine was). With your personal history of MI, that would probably be looked at all the more as a cause of chest pain. This might all sound alarming, but think of it as being your wearable friend looking out for you. I wish I had known to do this. My enlarged aorta was monitored for 20 years before I dissected unexpectedly early. I think my quality of life now would be better if I'd worn one and got treated straight away.
Hi Cliff, thank you so much for your detailed reply. It has certainly made me feel a bit better. The consultant at East Yorkshire Hospitals I have been referred to (Hull Royal/ Castle Hill) is a Consultant Thoracic surgeon. Over the past 5 or so years I have had lots and lots of CT, MRI, Echocardiogram and ultrasound scans, on my liver, full thorax and heart. My kidney nurse said this aortic was there on my last 6 month scan, but no one actually told about it until this first yearly one. I will be having one ever year for 10 years via Urology.
In Hull all partial nephrectomy patients are high risk for reoccurrence. I can’t actually remember which type of aneurysm my mum died from. I do no it was very big when they found it. I seem to remember it went into her groin but I aren’t sure. My mum was a very heavy chain smoker which can’t have helped. Smoked from age 11 she use to tell us. Horrific eh. I have never smoked in my life. I am absolutely terrified about this aneurysm. We have just been out walking our dog up at Huggate North Yorkshire and my back and chest were really pulling. I hope it’s just my anxiety with all this awful news. I made the mistake of looking at that Facebook site (AAA one) and saw some terrible pictures of a lady after her operation. She looked like she had been opened with a tin opener. I don’t remember my mum having that type of scar. I pretty much blanked that whole episode in my life out as it was so traumatic.
I don’t know what I can or can’t do now. Prior to this news I rearranged the back garden dragging massive concrete planters about, clearing big sacks of heavy rubbish etc etc. We walk miles with our dog. My diet is very good. I am a vegetarian too.
I have no idea how long I will be waiting to see this consultant but will ring his secretary on Tuesday when she’s back at work.
We had so much planned for this year but I am frightened to plan anything now. We were going on a road trip to Scotland June/July but I don’t want anything to happen to me in the middle of nowhere with no phone signal. I have added this condition onto my health app on my iPhone already.
Any other advice from you would be appreciated. You are so kind and thoughtful, thank you
Sounds like your Mum may have had a AAA, but ADs can also extend from the thoracic area down to the groin, so unless you check back (the death certificate should say) we can't be sure.
It sounds like you have a very good handle on your condition and your lifestyle factors. The main other thing is to get your blood pressure under control. This should be 120/80 or less, since the risk of dissection increases above 110/75. In my case we were not aggressive enough, plus the NHS usually say that treatment is not necessary until 140/90. That's based on long-term cardiovascular and atherosclerotic risk for heart attack, but does not apply to aortic disease. See aorticdissectionawareness.o...
As to what you can do, that's down to blood pressure again. Walking etc is good, heavy weights aren't so good. There's some info in our Patient Guide, which is for after an AD but would be good guidelines in the preventative stage like you, based on "METs". See pages 53 to 56 and the exercise reference on p. 89. aorticdissectionawareness.o... For anxiety, try deep breathing and relaxation exercises,,which also help with blood pressure.
One final point on a med alert bracelet. I had my condition on my Medalert app on my phone, a card in my wallet, and my family around me when I dissected. Everyone was worried and no-one remembered my aorta, as my lifelong condition of note was Afib, and everyone thought it was to do with that, or simply a heart attack. When your body goes into shock, logical thinking stops. It was only once they were wheeling me into the CT room, after a stent and 40 hours of tests etc, that I remembered my aorta, and was able to tell the staff. I always now say you need an actual wearable thing that can't be missed by paramedics or A&E staff.
Re the road trip, perhaps wait to see what the consultant says? We live in Scotland and owing to the geography, it is a lot bigger by road than it looks! There are only two aortic centres, Edinburgh and Glasgow, with the main Highland hospital in Inverness being unable to treat an AD, plus Aberdeen with some aortic capacity. June/July is also peak midge season, affecting the west the worst. The little blighters actually make me feel ill when I'm bitten, thank goodness for "Smidge".
Thank you again Cliff for replying. Can I ask with this AAA, is it always full open heart surgery? It literally terrifies me as it seems even worse than full by-pass surgery. You obviously had a big operation ? I am looking for positives but apart from it been found I can’t find any. Seems my height is going against too. How quickly is it likely to grow? If it wasn’t for you and Julian I wouldn’t have an idea of what’s ahead.
update, rang the consultants secretary and I am been referred to another department for an echocardiogram only as he doesn’t think I warrant an appointment due to the size of the aneurysm. I am very upset about this because he has no idea of my family history as this wasn’t mentioned in the letter from my Urologist. I thought I would get some sort of verbal communication because presently the only information I am getting is from this site.
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