Diagnosed with 5cm Aneurysm near heart

Hi Kristi,

I have a 4.2 aneurysm in the aortic root diagnosed two years ago. I have had a CT scan soon after diagnosis, echocardiograms 6 monthly (now yearly) and a stress MRI. I also have a bicuspid valve, which luckily is functioning well at the moment.

I saw the cardiologist last week (annual visit) and he said that having a bicuspid valve goes with a dilated aortic root and because mine is still quite small he does not seem to be very concerned. He said that if there is a sudden growth or it reaches 5/5.5 he will refer me as I am of small build.

The cardiologist you saw sounds a bit insensitive. I don't think there is a lot of knowledge generally about aortic aneurysms because I have never been given any guidelines about what I can and can't do, for example I was told not to lift anything which would cause me to groan. Also one doctor told me that I should definitely not ride a cycle whereas another said there was no problem.

When I was told about mine two years ago I was very scared so booked a private appointment for reassurance, but I had to wait six weeks for the scan, so I do think your experience of having to wait is typical of the NHS unless you have an emergency situation.

My GP told me that if I had any chest symptoms to ring for the paramedics so maybe the advice you were given could work for you.

I really hope all goes well for you as I know how stressful and worrying this condition is. Best wishes to you.

Hi Kristi,

I feel for you as I know how scary it is to be told that you have an anuerysm so near your heart. Mine was measured by an Eco at 4.2 but the CT Scan confirmed that at the widest point of dilation, it is 4.3. I was fortunate to have both Eco and CT scan within a week as I am covered by my work's private health insurance. I have since been told that as I am now in 'watchfull waiting' mode, the insurance will not cover me and that I have to get on the NHS system. I don't think I can advise you on how to get the NHS to bring forward your MRI date but I would start by putting pressure on your GP. It is totally natural to be concerned and for it to play on your mind. I was diagnosed last year 2 days before an important business trip and I went through a week of customer meetings and presentations in a daze. None of us with anuerysms know if and how quickly they will grow. Yours may have reached a quiet stage which means you have time to plan elective surgery if absolutely necessary. My sister had hers repaired at 5.1 and it was approx 3 months between murmur being picked up and surgery. Please rest assured that even if it comes to surgery, you can make a good and speedy recovery. My sister who is 51 years old was practically back to normal within 3 months. Our Cardiologist told us that he has even repaired the aorta of an 80year old lady wtih great success. Wishing you all the very best.

Hi Kristi,

The advice you recieved from Marlborough is the best you are proberbly going to get regarding your problem as you both share the same thing, in saying that my view of doctors are quacks and they love giving people the worst scenario's so that it gives you something to think about, but what they forget is that normally we go away thinking the worst because it is in our natures to do so and if we are lucky things change for the better. As in my case my family were told to be prepared that i would properbly not make it, but 'thank God' that was not the case and i am very grateful to be still here!  

Hello Kristi and everyone,

It's nice to know that other people share the worries that come with this diagnosis. I think I have found the worst bit is the inconsistency of advice I have received.

At the first echo which was for something else, the sonographer told me I had a dilatation of the aortic root. I asked if she meant an aneurysm and she replied that of course not, if I had an aneurysm I would be in hospital. As I had been a nurse all my life I was not convinced and saw my GP who said that 4.6 (as it had been measured) was indeed an aneurysm. Then I saw the consultant privately as I was so anxious, who called it 'your ascending aneurysm'. Since then I have had gloomy consultations from some and very upbeat meetings with others.

It seems that there is no real expert on aortic disease, at least not where I live.

Against all advice I am afraid that initially at least, I could not stop searching on the internet to try and get some comfort. I watched a videoclip from the Cleveland clinic and that was very reassuring.

Also, it is so good to hear of your sister's recovery Mary Rose and that even an eighty year old recovered well. I have been lucky as I am in my sixties and older than all of you, and I really hope everyone with this condition either remains healthy or gets the treatment they need. Good luck to you all.

UPDATE: My appointment for the tube down my throat is this Friday. Part of me actually hopes that my valve is biscuspid, so they will get on with it, replace the valve and repair the anueurysm. The alternative being, wait for the aneurysm to get bigger, then repair. Wish me luck. 

Yes, very good luck Kristi.

UPDATE: Transeophageal echocadio gram performed one week ago. They found that my valve is bi-cuspid. The doctor told me (while I was still out of it from the twilight sedation) that they now want a CT scan, ad tnhat, and all the other information will be sent off to the surgeons. As of today, that appointment has not been set,  but I did receive a little booklet in the post about heart surgery, with a copy of the paperwork from the test??? 

It sure seems to me that US doctors and hospitals are WAY more informative with the patient, but again, I am way thankfull for the free care.

But the doctors haven't even told me what I should/should not do, apart from "NO SMOKING OR DRINKING". I feel so lost...like a ticking time bomb is sat right in the middle of my chest, and the doctors just don't seem to care. 

Hi Kristie,

At least you know the cause of your aneurysm now as apparently a high percentage of those with bicuspid valve have an associated aneurysm at the root of the aorta. I totally agree with your opinion of the information you have been given by the medical team, and as I said before this has been one of the hardest things for me, as I like to know what I can and cannot do to maybe improve my situation.

When I was told I needed a CT scan, I wanted it immediately because I was so anxious. I thought it would happen within a fortnight but when I rang the department I was told it was not urgent and it would be seven weeks! I can so remember feeling that the aneurysm was growing rapidly and by the time I did get the scan it would be too late. Silly I know, but it is such a shock when you think you are healthy.

Try not to worry. Even if they are not very forthcoming with information, they will have you wellbeing in their minds and will do their best for you. Good luck with your tests and let us all know how they go.