Thoracic aortic aneurysm

[22greatestshowman]

Have just been told I have a thoracic aortic aneurysm. I haven't seen a specialist yet .Can anybody tell me what will happen whenI see a specialist, Am worried sick

[Cliff_G]

Hi 22, this sort of discovery can be worrying when it's out of the blue, but the fact it has been found is great - it means you are much more in control and you and your doctors can manage the situation well.

Just to get a more complete picture, what age are you (if you don't mind saying), who has told you this and on what basis? Any further information they have given you?

[22greatestshowman in reply to Cliff_G]

Hi am 72 but have always been fit and active. I was asked to have routine lung scan as part of a NHS program they are doing. It is for ages 55 to 74 and 11 months. I am glad I went as I would never have known.But it came as a great shock. Also I am going away to Thailand for over a month on -9th May so may not have my appointment for Hospital till I come back.

[JulianM]

I was diagnosed with this, completely unexpectedly, nearly 4 years ago when I volunteered for a sports cardiology research project and had an ultrasound scan (transthoracic echo) which saw my ascending aorta at 4.6cm where it should be around 3.0cm. A CT scan with contrast confirmed the diagnosis and gave a measurement around 4.5cm. I can identify with the sense of shock.

More than three and a half years later, I know a great deal more, I'm much more relaxed about it, have just started on preventive medication (irbesartan) and am confident that my 4.8cm ascending aorta isn't going to hurt me any time soon. My specialist would recommend surgery if it goes over 5.0cm. We've done genetic tests and found nothing - or, to put it another way, we've ruled out around 11 different markers which would point to higher risk. That said, my consultant is convinced my condition is genetic and I show minor signs of a connective tissue disorder; my aortic valve is normal and working well. I have no symptoms and my blood pressure is also very healthy. My next scan is in a year's time.

It's a challenge finding patient-friendly reliable information about this condition: there's not even an entry on the NHS A-Z of conditions, but there are guidelines and there are some international organisations that have good resources. The US Marfan Foundation is one of the best, and has a remit that goes well beyond Marfan syndrome, across genetic aortic conditions.

In this condition, size matters, and also family history. Size is something that needs to be checked with CT or MRI, done at a specialist centre where they can link the scan to your heart rhythm: if this hasn't already been done, it's the next step. Your age also matters: aortas stretch over the decades and if it's over 4.0cm at 20 it's abnormal, at 80, not so much.

You also need to know if there is an underlying issue with your aortic valve: bicuspid valves - usually involving incomplete separation of the three leaflets in the valve - are the most common kind of congenital heart disease and can give rise to ascending aortic aneurysms. An echocardiogram is the best way to assess this.

Family history of early sudden unexplained deaths, or of aortic disease of any kind, raises the risk - but unless you're over 5.5cm, it's still very unlikely to be an immediate emergency.

I would be more than happy to share what I've learned, so please ask away, but the top priority is to get yourself to a specialist medical team for monitoring and to work on your relationship with them. The NHS has some genuinely world-class services in this area: relax.

[JulianM in reply to JulianM]

The other key question is, exactly where is it?

If the enlargement is in your aortic root, ascending aorta or aortic arch, then everything I've said above is relevant.

If it is in the descending aorta, then information about abdominal aortic aneurysms is more relevant and treatment options and even the surgeons you might be talking to are quite different.

[Robfromwales in reply to JulianM]

Julian - we have communicated previously and are your posts are always so informative and helpful . Can you say a bit more about it ‘iberstartin ‘ which you referred to as a preventative treatment). Mine is 4.88 with bicuspid aortic valve found at aged 61 and have only had one 6 month scan which showed no change .

[JulianM in reply to Robfromwales]

Very good news that your aorta is looking stable, and I hope that stays the case.

Irbesartan is an angiotensin-2 receptor blocker usually given to manage high blood pressure. There's a theoretical argument and some evidence from mouse models that this kind of drug could slow the growth of genetically driven aortic aneurysms, and there is weak evidence from one randomised double blind controlled trial - the AIMS study - that this actually happens with low dose irbesartan in people with Marfan syndrome. The evidence is weak because the trial was difficult to recruit and the size difference between people on treatment and not on treatment was small and also complicated by the fact that some of the volunteers were children. I don't have Marfan or high blood pressure. However, as my consultant told me, 'it's the one thing we can change' so I'm now having a go.

Very early days, but so far, no unwanted effects at all. My GP is being really helpful, and I'm booked in for blood tests (kidney function and lipids) after the first week and a phone call to discuss the results and any effect on my blood pressure a couple of weeks after that. I've been thinking about this for a year ... and quite expect it to be lifelong treatment. So not something I've rushed into, or would suggest anyone else rushes into, either.

When an aortic aneurysm is linked to a bicuspid valve, the case for irbesartan would be much weaker, though blood pressure control is still very important. So if your blood pressure is high, discuss treatment with your doctor. If you're not sure, get it checked with a 24-hour monitoring exercise, etc.

Hope this makes sense and is helpful ...

[22greatestshowman in reply to JulianM]

Thank you for the information.Iwas only told Tuesday morning by a phone call. I think I was that shocked I can't thinkwere she said it was .I am waiting for my letter and an appointment for the hospital.But as I am going to Thailand on 19th of this month not back till 22nd June I feel very worried as I know I probably won't have my appointment before I go.Also it was found through an NHS lung check which I was invited to go to for ages 55 to 74 and 11 months.So glad I went as I would never have known

[JulianM in reply to 22greatestshowman]

It's important to avoid heavy lifting (e.g. maximal effort weightlifting) and any kind of extreme exertion that would send blood pressure exceptionally high, but most everything else is OK.

If you don't already know about your blood pressure, may be worth getting a blood pressure monitor and doing some home readings and discussing with your GP.

Also recommended not to take fluoroquinolone antibiotics (such as ciprofloxacin, usually prescribed for lung infections) - for more information see rxlist.com/how_do_fluoroqui...

Based on how it was found, it could be anywhere in the thoracic aorta, so it could be ascending or descending. But accurate measurement will depend on another scan, so I'd expect that to be the first thing they'll arrange for you.

[Cliff_G in reply to 22greatestshowman]

Hi again,

A lot of really useful information from Julian, as always.

Knowing that you have an aortic aneurysm is a big part of the battle, so again, be reassured that now you know, things will proceed to get you checked out. Looking at the near-term issues:

The trip to Thailand is of concern for you. To have had an aortic aneurysm found at your age is not particularly unusual; the aorta grows steadily throughout our life. I therefore doubt very much that it's gone from not knowing about it to something bad happening in the next month. However, you could gain yourself some reassurance by wearing a medical alert bracelet. I failed to realise this was advisable and when my 20-year-long history of aortic dilation erupted in a dissection at age 62, it took some time to get diagnosed. It's always a good idea to help your doctors to help you by giving them this information clearly, as it helps them look in the right place.

It might be worth checking with your travel insurance. If you took insurance out before your aneurysm was diagnosed, it may still be valid - check the terms. If you took out insurance after diagnosis, you should have disclosed it, and as you've not been seen by a Consultant yet, they might well exempt coverage for any aortic medical event. In my case, I was under cardiology care and my dilation was relatively small and they covered me for my trip to NZ - good job, as that's where my dissection happened.

As Julian has said, good blood pressure control is key. Get a home monitor and see if your resting BP is above 120/80 on average and if so, talk to your doctors about getting this corrected. And it's best to get this corrected sooner rather than later. Most GPs start you on a regime of BP control (and at the NICE level of 140/90, which is inadequate for aortic risk) which if the first drug doesn't work, can take months or even years to get corrected. With an aneurysm, you have a direct risk factor and should get your BP sorted in weeks, or months at most. Good cholesterol control is also very important - plaques on the inside of the aorta can be as damaging as inside the coronary arteries. Your GP should check cholesterol figures plus a thing called Lipoprotein(a), a cholesterol relation which is independently linked with certain aortic events.

Julian also mentioned not putting too much stress on your body in any way - lifting heavy objects, holding your breath when lifting, etc - these can stress the aorta directly or via BP peaks. So no bungee jumping in Thailand. But it's important to keep up cardiovascular exercise so that your blood pressure benefits.

When the time comes around for a scan to see how your condition is, please come back here and let us know how you're getting on - there are also a few tricks to be known about then.

Best wishes

[22greatestshowman in reply to Cliff_G]

Many thanks for your information. I have already informed my insurance company ,As we get annual insurance I have to pay a bit more ,But at least I know I'm covered god forbid if anything were to happen I will let you know how I get on with hospital

[Cliff_G in reply to 22greatestshowman]

Have a great trip!

[Robfromwales]

Thanks. I am in 32 mg if canderstartan and diaretic 2.5mg already

[JulianM in reply to Robfromwales]

Candesartan is in the same group as irbesartan and there is no evidence that one is better than the other (though both may be better than losartan, which was the first drug people tried using for this). So basically, you're ahead of me on this one!

[Robfromwales]

Thanks. Controlling BP is my cardiologists main concern to avoid dissection or rupture (alongside the obvious such as lifting heavy weights etc). I am just getting back into low level cricket