Diagnosed with 5cm Aneurysm near heart

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Hello everyone, I'm new here and just want some advice.

Two day before Christmas, I was diagnosed with a 5cm aneursym near my heart and told, "If it's not repaired, it will burst and you will die". The NHS cardiologist had only just seen my file and met me, 5 minute before that.  He also stated that if my valve is bicuspid, they need to replace it and repair the aneursysm now. So I've been waiting for either a tube down my throat, or an MRI to get a clearer picture. So far, I've only received a phone call, from that Cardilogist, on New Years eve, saying the Tube test should be end of Jan, beginng of March, but the MRI will be sceduled in the interum. 

I'm originally from America, where my possible bicuspid valve was monitored yearly with echos. I've been here in the UK just over 4 years and only ONCE did a Dr. so much as listen to my heart, until they thought I had a TIA. 

Is this typical of the NHS? Give you bad news, then make you wait?? Some say I need to go to my GP and see if they can refer me to another place to get the tests done...others say, play up your symptoms. I am somewhat symptomatc, but so far, I still walk a mile to the bus every morning, and work a 40 hour work week. 

Any advise, words of wisdom, words of caution...any thing...I just don't want to feel alone in this anymore. 

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  • Posted

    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.

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    • Posted

      Thank you marborough. Just knowing there is someone else out there, who understands, makes me feel loads better.

      My Cardiologist told me to quit smoking, which I have (I was nearly done anyways), no more drinking, which I have cut WAY down, and other than that, don't plan any holidays (as apparently, I am on stand by for these tests). I'm only 44 and this news quite shocked me, because again, all was well 4 years ago. In fact, my cardiologist in the US told me, "keep going the way you are and you might have to have your valve replaced when your 70". 

      I hope things continue to go well for you...and thanks again for sharing your story with me. 

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  • Posted

    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.

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    • Posted

      Thanks mary-rose. The worst part for me (thus far) has been waiting for the further tests. I missed a phone call last night from the hospital, and they didn't even leave a message, nor did they try another of my numbers.  All the best to you as well. 
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    • Posted

      Hi Kristi--Hope you see this and can google the article "Beating a Sudden Killer" (by John A Elefteriades - famous aneurysm surgeon at Yale Aortic Center). It sounds like your aneurysm is growing quickly--hope you can have surgery very soon.
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    • Posted

      Hi Pawstruck...unfortunatly, I don't subscribe to scientific america, so I can't read the article. 
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  • Posted

    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!  

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    • Posted

      Rina, the doctor was actually pretty cool...I think I was in shock, as I was not expecting that news, and my hubby wasn't with me due to work. I'm sure he told me more than I remember, but once he said "5cm Anuerysm....will burts, you will die" I kind of tuned out. I'm actually a "prepare for the worst and hope for the best" kind of girl, so, his bluntness didn't really bother me. Or again, maybe I was in shock. lol

      I'm glad things turned out well for you. 

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  • Posted

    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.

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    • Posted

      marlborough, I too have watched clips from the Cleveland clinic, and others as well. I like to know what I'm up against.

       I actually lost 2 dear friends to very similar fates. The difference was, both of them were older than me, by about 20 years, both of them drank and did drugs, and one of them never went to the Doctor. The the other didn't stay on medications or follow up with his doctors, after he lost his insurance.

      I'm very thankful to be in the UK, with the NHS, and I have proudly paid my share, from the 2nd week I got here, over 4 years ago. My frinends in the US are shocked at how long it's taking, but they can't knock the free care.  Fingers crossed, I get some solid answers and a good action plan on Friday. 

      Thanks again for being here, I don't feel so alone in this now. 

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  • Posted

    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. 
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