newly diagnosed with Thoracic Aorta Aneurysm

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

My younger sister aged 50 was diagnosed with TAA of 5.1 cm in January and operated in February due to her small frame. She is recovering well which is encouraging. I have been meaning to go and have a check myself but kept putting it off. I went to my GP 2 weeks ago and he immediately picked up a murmur. Echo followed by a CT scan confirmed I also have an aneurysm but mine is still at 4.27 and I am 55 years old. Clearly we have a genetic disposition but mine is growing more slowly (so far) . I am in shock and still cannot get my head round it. I am fit, practise yoga, follow mainly  a vegietarean diet, don't smoke, hardly drink and do not have high blood pressure. I am now now in 'watchful waiting' and will have another CT scan in 6 months time.  I have been advised to take Beta Blockers and was wondering how patients react to them. I have a professional job in sales and need to keep my energy up. I have off course been considering giving up work but sitting at home waiting for my aneurysm to grow will not help me. I would also like to know if aneurysms always grow and if I need to accept that mine will be bigger by the time I have my next CT?

 

0 likes, 10 replies

Report

10 Replies

  • Posted

    Yours has obviously been growing for a long time to have reached that size but as it is newly diagnosed you do not know how quickly it is growing. Each person’s grows differently. My one was 3.1 (hardly an aneurysm the consultant said) when discovered about eleven years ago. Initially it was scanned every six months, then extended to a year and then two years. By this year it has grown to 3.6cm.

    Statins were at one time suggested by a consultant who was very quick to point out their side effects but beta blockers were never mentioned.

    I did take statins much later when I was found to have aortic stenosis prior to having the valve replaced. I stopped started statins several times due to muscle pain and slight memory problems.

    After my valve replacement I was prescribed a beta blocker as I had developed atrial fibrillation and was very glad to stop it after having a successful cardioversion.

    I would try both drugs and see how they affect you. The majority of people do not have side effects.

    But give up work? Why? You are not ill, you have a condition that fortunately has been discovered before becoming life threatening and is treatable.  

    Report
    • Posted

      HI Derek, thank you so much for your reply. It really does help to connect with people who understand the condition and the emotions which go with it. I have had moments of panic and thought the worst at the slightest heart flutter. I am sure that I will settle down once I get my head around it and I have my next scan in 6 months time. I will discuss with my doctor why beta blockers and not statins. I go on holiday at the end of next week and so I am going to wait until I come back before I start any medication. You made me smile with the work comment confused   Wishing you well with your condition.
      Report
    • Posted

      Are you going abroad? Travel insurance companies do not like aortic aneurysms no matter how small. One qouted me £2000 for a month in America. How much if I go to Cuba I asked and she replied £1000. I just asked my usual travel insurance company to exclude it from the policy from then on.

      I told the person doing my next scan about it. Ridiculous she said. If it bursts it will only cost them for the ambulance to take you to the mortuary:-)

      I know a now retired elderly racehorse trainer whose aneurysm burst during the night and he was rushed to hospital and his life saved. He was back training and riding his Hack not that long afterwards.  

      You are never to old for the operation if otherwise fit. I spoke to a man recently who was nearly 90. He had discovered his own massive aneurysm from a large swelling in his stomach. He went to jhis doctor and was operated on within three weks. 

       

      Report
    • Posted

      Oh gosh, I had not thought of travel insurance. I think I am covered through my bank account but I had better check. For next week's trip though, I should  be OK as I am going to Malta which is in the EU and which is where I was born. Have a good evening.    
      Report
    • Posted

      The bank ones are rather basic and will probably not cover pre-existing medical conditions.You should tell them of your change in health. Though as you say you are covered with your E111.

      When I moaned about insurance diffculties to my cardiologist he said you can go to NZ as they have a reciprocal agreement with us.

      I told him that I did not want to go there again but that I wanted to go back to OZ who do not have a reciprial agreement. Most people take a chance on insurance.

       

      Report
  • Posted

    I know just how you're feeling Mary-Rose. I was told that I had an aortic root aneurysm of 4.6 following an echocardiogram about eighteen months ago. I only had the echo because of an irregular pulse rate and this turned out to  be ectopic beats and not really a problem. I was totally shocked at the time and wondering how I could live with this knowledge, but now I really don't think about it too much. A subsequent CT and MRI showed that it was 4.2 so that was a bit of relief but I also have a bicuspid valve and apparently the two conditions often go together. I have started yearly echos now and not on any medication. I just have to check that my blood pressure remains low with a home monitor. The cardiologist told me that it will probably grow but that no surgeon would consider operating until at least 5cm. It is a horrible thing to live with, and it is always there at the back of your mind but it can be done. I was 64 when I was diagnosed, so I retired. I was nursing and the work involved a lot of heavy patient care, but I miss it and if I was in your situation I would stay at work.Good luck to you and your sister and enjoy your holiday.
    Report
    • Posted

      Thank you for your reply. As Derek said in his post, at 4.2, mine must have been growing for quite a while and maybe it is not such a bad thing to have been blissfully unaware of it. It is not as if I would have changed anyhting about my lifestyle because I lead a fairly healthy life anyway. I am now under the care of Mr Yap, a cardio surgeon at the Heart hospial in London and who operated on my sister. As you said, no surgeon will consider surgery before it reaches 5 at least. I have 6 siblings in total and they are all having echos and getting CT scans booked. We do not suffer from Marfan disease and so it must be some other genetic condition. My mother always said that our grandma had died suddenly at the age of 57 and in those days they probably would not have known if it was aneurysm. I have not told my mother about my condition as she had become very upset when she found out about my sister's. Ironically, my mother is 81, overweight, has high blood pressure  yet no aneurysm!  My sister is my inspiration and her post surgery recovery has been amazing. My work is not physical but I will see how I get once I am calmer and more accepting about the situation. All the best to you too.
      Report
  • Posted

    Hi I too am in the 4.2-4.3 range, It was "found" 7 years ago... I get an echo every 6 months and have been happy to hear it as remained the same. I take two drugs, Verapamil and Exforge to control blood pressure and heartrate. I am told by two differt cardiologists that it can stay at that size "forever"... I have mild aortic regurgitation as well.. all in all no changes in energy levels... I am retired out on the town frequently, walk for miles a week, its pretty much not on my mind. Beta Blockes which I am on do have side effects some of which you, as a woman, would not get to "enjoy", so I've switched meds from time to time... Be well... live life and enjoy... 
    Report
    • Posted

      Hi Larry, thank you for your comments. How encouraging to hear that yours has stayed the same size for so long. I am so hoping that mine will also show up as not having grown by the time I have my next CT scan in December. From what I have read, for familial conditions and also for Marfan disease sufferers, the growth could be a bit faster. My sister who had the surgery back in February has continued to make excellent progress and is nearly back to normal. She told me this week that she has started her Pilates classes again. Our other 5 siblings have all had clear CT scan results and so my sister and I are the 'special' ones. I have read that TAA is less common than AAA and that both types show up more in men than women. I have been put on 2.5mg of Bisoprolol which do make me a bit light headed at times and my blood pressure is now around 105/68.  One positive side effect is that I feel more chilled out which has been noticed especially by my work colleagues. There are now more and more days when I don't think about it so much but then I get back on the internet for more research and the anxiety kicks in again. It is good to hear that you have continued to be active and that you have such a positive attidude. Thank you for your advice and hope that you will continue to enjoy a full life.

       

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up