I have recently found out I have an AAA at 4.8cm (found by accident when CT scan for other issues)
I also have a Bicuspid Aortic Valve Disease (which for 50 years always presumed was a heart murmur)
I have an appointment to see the Vascular Consultant in 2 weeks time.
However I am scared. My dad had a brain aneurysm at my age and survived and my grandad had a brain aneurysm at the same age and sadly passed away at the same age as my dad.
Do you think they will take this into consideration and operate sooner? I know for woman it is 5cm to operate.
I do have constant back pain and stomach ache (why I had the CT scan in the first place)
I consider myself fit and not overweight, don't smoke and trying to keep blood pressure as stable as possible.
Its hard to go from working out 3 x week to now being restricted to walking only and I want my life back.
Thank you in advance.
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Safeangel
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My husband had a triple A quite a few years ago, like you found out by accident when he had a C.T. Scan to check on his prostate cancer. He didn't have any heart problems. They scanned regularly and I think the criteria for men was 5.5. When it reached that they did a graft, touch wood that was over 13 years ago and no trouble since. It took him some time to recover, but he did take himself out for walks gradually increasing distance and time. I don't know whether they will take into consideration you have a family history but I would think they may. I hope you are able to get it sorted soon.
I too have a bicuspid valve with a mildly dilated aortic root at I think 4.2 but not in my stomach. I totally understand your concerns and they will ask you about any family members with aneurysms and if they've ruptured but not sure where this puts you. It's scary but I've learnt to just be mindful of any symptoms and know that I get scanned yearly. I'm 5ft so I'm not sure if they would do it earlier I may ask next time I'm at my appointment.
Keeping blood pressure low is very important.
Keep us updated and try not to stress too much as at least it's been picked up and you on on the radar.
Sorry to hear you've had such a worrying diagnosis, but the first thing I will say is that it is better to have discovered it than to have an emergency as the first indication something is wrong.
Brain aneurysms (from what I know, but I'm not a doctor) are not particularly related to aortic problems, however there are "Connective Tissue Disorders" that can create vascular issues all over the body. On this basis, it is absolutely vital that your family history is taken into account and, in my view, you should be referred to a Geneticist to check if you have any CTD genetic markers. The relevant CTDs are Marfan syndrome, Ehlers-Danloss, Loeys-Dietz, and in women Turner's syndrome.
Additionally, as you have a bicuspid aortic valve, you should have your ascending aorta, arch and descending thoracic aorta scanned (CT or MRI, not just echo) for aneurysm or any other indication that the BAV is creating potential future problems for you in that or nearby areas. They should also echo scan the valve itself.
As you are seeing a Vascular consultant, they should address both the AAA and the descending thoracic aorta (if not, ask). However, they may or may not take on the issue of the BAV and ascending aorta. This is because we aortic oddities cover more than one speciality. Generally, issues in the ascending aorta and arch are dealt with by cardiac/cardiothoracic consultants or surgeons but the descending and abdominal aortas are managed via Vascular consultants. If your Vascular consultant doesn't address your BAV and ascending aorta you should specifically request an appropriate referral.
Extremely important to keep your BP properly under control, which means 120/80 or lower, not just the usual NHS figure of 140/90 below which they won't usually treat. There is solid evidence just last year that the risks increase significantly above 110/75.
Two weeks to wait will fly by, so read up on what you can, from reliable sources such as the NHS and BHF. There is also a fairly young specialist AAA charity called AAA-UK aaa-uk.org/. Have a focused list of things to ask the consultant. All this helps you to help manage your own case, and gives you something constructive to do whilst waiting.
Very best wishes and let us all know how you get on.
Cliff thank you so much for taking the time to reply to me and giving me so much information. I am however a little confused as you mention thoracic aorta, and as far as I am aware I only have AAA and BAV (I hope that's all I have lol)
Scans such as heart scan and CT scans already done and hopefully will get a decision on next step soon.
I am getting the blood pressure down to around 126/89 but GP won't give me any further tablets to lower it anymore.
Thankyou again Cliff you are an angel in disguise.
BAV does not directly affect the abdominal aorta as it's too far away. However, it's been fairly recently confirmed that the blood flow coming out of a BAV is not as smooth as from a normal aortic valve. Blood can (not always) come out of a BAV in a jet which hits the side wall of the aorta, and over time can degrade the aortic wall, leading to an aneurysm at that point, which creates its own problems.
The aorta needs to be treated as a whole, right from the valve, through the ascending aorta, the arch and the first part of the descending aorta (these make up the thoracic aorta), and on to the abdominal aorta. There's a good diagram on Wikipedia at en.m.wikipedia.org/wiki/Aorta. Everyone with any aortic problem will have theor own particular set of conditions which will be different from many others, but without knowing what a person's aorta is like, it's wise to check the whole thing. That's the reason I mention the thoracic aorta as well.
If there is a CTD, then there is a much greater likelihood that a more extensive length of the aorta will be affected.
In my case my abdominal aorta is fine (as it happens) whereas I had an aneurysm in my ascending aorta and then had an aortic dissection, the thoracic aorta's equivalent of an AAA about to rupture. My valve was in fact fine, my arch wasn't great, but as you went down the descending, it pretty soon became ok again. Some have problems confined to just the ascending. Others I know have had a dissection in the ascending and it went all the way up, over, and down the whole descending and abdominal aorta. Some just have an AAA and it gets treated and they have no further problems. But as I say, no-one knows until scans, genetics, etc are done.
It sounds like you're getting the right monitoring and treatment.
On the question of blood pressure, the most recent work is not widely known about yet. It's covered at aorticdissectionawareness.o... which is where I got my figures from.
Thanks Cliff you are like a walking encyclopedia lol. You have a lot of knowledge. I hope you are all repaired and enjoying life or are you still waiting for surgery?
I had my dissection 5 years ago and it was fully repaired as an emergency case. I did know about my aneurysm beforehand (for 20 years!) but it was monitored against now-outdated information. After the op. I had a rough time with over 6 weeks in ICU, and this, and my age, have meant that I'm still very restricted physically - can no longer walk the hills I love so much. Still undergoing tests to find out exactly why I'm not recovering.
I've coped with it all by finding out everything I can, and I like to help anyone in a similar situation understand their situation properly, based on up to date knowledge. I was never sat down by my doctors and had the risks properly explained. Since my AD, I joined Aortic Dissection Awareness and helped produce our booklet for post-AD patients. As I now say, you don't want to be having to learn anatomy on yourself!
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