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Diagnosed with 5cm Aneurysm near heart

Posted , 21 users are following.

kristi18883
kristi18883

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. 

1 like, 105 replies

105 Replies

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  • marlborough
    marlborough kristi18883

    Posted

    I've been told that as my aneurysm is in the aortic root I would only be able to have open heart surgery at the present time  where a dacron graft would be inserted. I am just hoping that my aneurysm stays within limits and that I never need to have it done or that a new procedure is developed for this area of the aorta. Good luck to everyone, it looks as if great progress is being made and should be beneficial for younger people in the future.
    • Grimspite
      Grimspite marlborough

      Posted

      I know this sounds drastic, but I was actually relieved when finally surgery became necessary. Whilst you still think you may have to have it done you're worrying about it, and stress isn't recommended. This operation has been performed for decades now, and the dacron graft is what I have. Once it's done that's it. Sorted. 
    • kristi18883
      kristi18883 Grimspite

      Posted

      I totally agree with you on that comment Grimspite...at least I think I do...have done it yet. I just want it fixed, give me what ever meds and physically therapy I need, and let me get on with my life. Right now, I keep replaying what one cardiologist told me, "you have a large aneursym, and if it's not fixed, it will burst, and you will die." cry  So far, not a thing has been done but look, and I'm not on any meds.  It just feels unerving to know about it, but have to wait fix it. 
  • marlborough
    marlborough kristi18883

    Posted

    I also would love to have my aneurysm fixed, but I believe a thoracic aneurysm is more difficult to operate on than an abdominal one as it invoves open heart surgery. I have a bicuspid valve too so that would probably need sorting out as well. Surgeons have perfected the operation for abdominal aneurysms now and also have a screening programme for them. I know how you feel Kristi and I am sure when your operation time comes you will recover well and be able to put all this behind you, but I am older and I just think that a huge operation like this would not be good at my age. However, if it is suggested to me then I will obviously take the advice I am given. I am just hoping that the powers that be can perfect a graft to use on the 'bendy bit' of the aorta, that would not require such major surgery. Good luck to you all.
    • Grimspite
      Grimspite marlborough

      Posted

      Sounds like both you and Kristi do have a more difficult condition. But I believe that as long as the surgery is elective, and not a sudden emergency, the outcome is very good. I remember that a week before my op I suddenly looked at the stats again, and instead of think one in so many die during this procedure I started to think - hang on. The survival rate is many many times that, and it really changed my attitude.
  • casey78892
    casey78892 kristi18883

    Posted

    Hi Kristi,

    I fully understand whr your comming from I have sought opinions from 3 different GP's I am from Ireland and can get no advice or support from anyone here. I was dianosed with a 4.2 thoracic aneurysm on new years eve. I am only 30 and very fit. Anyone I have talked to seem shocked and cant understand it thr reactions frighten me I dont no what to think or whr to turn to. I have 2 beautiful healthy children and would some day like to add to my family but I cant find any info on pregnancy and aneurysm my cardiologist said it was our choice but that it may make things worsse. Dont no where to go from here . . . .

    • Grimspite
      Grimspite casey78892

      Posted

      My aneurysm was hereditary - my father had one in exactly the same place. It's just bad luck. However, your fitness should make your post-op recovery very swift. Your GP should refer you to a cardio-vascular surgeon, who will take over your care and should answer any questions you have. Personally, I wouldn't consider another pregnancy before you undergo surgery, but I'm not a doctor. 
    • kristi18883
      kristi18883 casey78892

      Posted

      When I was diagnosed with just the bicuspid aortic valve, in my late 20's, I was advised against pregnancy. I can only immagine the strain that is placed on the heart during pregnancy and birth...I'm wondering if maybe you have a bad valve as well? Though,  as Grim stated, " I'm not a doctor".  

      Just take care of yourself and your family as best you can. Cut out any indulgences and try and maintain a fairly healthy lifestyle. (I know that can be hard with little ones) 

      I have found an enormous amount of information, just by googling questions.   Best of luck to you. 

       

    • noreen19250
      noreen19250 casey78892

      Posted

      Hi Casey

      I have a 4.4 aneurysm , am from Ireland also. I am with you on the lack of advice and info. This lack of knowledge makes me frightened and alone.

  • casey78892
    casey78892 kristi18883

    Posted

    Thanks for the advice its nice to talk to someone that understands! I do have thickening of valve aswell it was all so much to take in on the day will be better prepared for next visit. I have stopped the running & gone back to walking  

    & cycling because im just afraid il do more harm than good. Thanks guys 

    • mary-rose15619
      mary-rose15619 casey78892

      Posted

      Hi Casey, my sisiter who has already had the surgery for a 5.1 cm thoracic aneurysm aged 50 had two daughters and my youngest sister aged 45 with 4.1 cm aneurysm and in watchful waiting had 4 boys. As we have all been diagnosed less than 1 year ago, my sisters do not know if their aneurysms were already present during pregnancy. Ours is definitely genetic even though we have tricuspid valves. No one can tell us why us three and not our other brothers and sisters even though we are the fittest and healthiest and why did it grow faster for one of us. We all take beta blockers and continue to live as healthily as possible. I am mindful of strenuous excercise and have even stopped doing some of the more advanced yoga poses. As I travel a bit for work I now ask strangers to help me with my suitcase. It is frightening to live with the condition but I still prefer knowing than not. How many more people have aneuryums and do not know? Best wishes to all.
  • marlborough
    marlborough kristi18883

    Posted

    Hi Casey,

    I am so pleased that my bicuspid valve wasn't diagnosed until my sixties as I had three children and was blissfully unaware of any problems even though the doctors always told me I had ectopic beats, This was put down to coffee and tea! My first daughter weighed just over 10lbs which was a shock. When she was born (with forceps) the doctor told me I was lucky not to have needed a caesarian, but in hindsight I wish I had. There were no scans in those days! I don't know whether I had the root enlargement then but obviously I had the bicuspid valve. If I had known I think I might not have had more babies. I suppose it is the labour process that would cause the strain to the aorta, or is it just the added strain on the body through pregnancy?

    Like all of you I have always been fit, a non smoker and never weighed more than 8 stone. Like Mary-Rose I am glad that I know about the aneurysm now and it can be monitored.

    One piece of advice that was stressed to me was not to get constipated because of the strain involved. I don't know if any of you have been given that advice.

     

    • casey78892
      casey78892 marlborough

      Posted

      My cardiologist told me that its not the pregnancy as such but the hormones that would cause the aorta to stretch more during pregnancy. I sometimes wonder how I made it this far at all both my babies were 10lbs and I  went 2 weeks over with them both and had forceps with first and really had to do a lot of hard work to get my second out! Before I knew about this I was lifting heavy bits & pieces like buggy in & out of car etc. I am glad that I know about it because I would have carried on as normal if I didnt and was all set for further pregnancy & if I hadnt known about this it could have bn disasterous. Im going to cut back on work a bit & just take it a bit easier my consultant told me to carry on as normal & not think too much into it. 
  • BillyFriend
    BillyFriend kristi18883

    Posted

    Just adding my experience as someone mentioned they never hear from patients with successful outcomes...

    I returned from holiday last July with lower back pain. I was (am) a fit 49 year old male and had no idea what was about to happen. After some investigation, a CT scan revealed a large 9cm Thoracic Aortic Aneurysm. As you can imagine, this became a very urgent condition.

    I won't go into the lengthly details at the moment, but the end result was to undertake urgent surgery. It was nearly 11cm by the time of surgery 1 week after discovery.This was a major operation that involved opening me up quite considerably and replacing a length of my Aorta below my heart with a "Nylon" tube. I say Nylon, but I don't really know what material it is.

    I did need some remedial treatment the following week to resolve persisitant headaches following the op, but I made a great recovery and spent in total about 2.5 months off work.

    It's now 7 months since surgery, and I had a follow-up MRI today. It seems to be ok, but I do need to discuss some of the findings with my surgeon. Nothing major, just precautionary.

    I know how traumatic these kind of experiences are, fortunately for me it all happended some quickly. The NHS were absolutely brilliant throughout this.

    I'm happy to go into detail for anyone about to experience similar circumstances, but just to say keep positive.

    • Grimspite
      Grimspite BillyFriend

      Posted

      To say you were lucky is an understatement... But it's so good to hear from someone who had the biggest aneurysm I've ever heard of and is fighting fit again! I do hope you've reassured others who have yet to have the op. Mine was in 2006; I had a scan for something else a couple of months ago and everything is still absolutely fine.
    • BillyFriend
      BillyFriend Grimspite

      Posted

      Yes it was large, although shortly before mine they had done similar surgery on another 49 year old male with a 9cm, which again had a good outcome. It was the head anaesthetist 2 days before the operation that told me it was 11cm "at its widest point", so I suspect it hadn't actually grown, just different outlooks on the size. Still, at the time they gave me very little time to live, hence the urgency of it.

      They normally operate on 6.5cm+ I was told. This was a Liverpool (LHCH). They have a great team of specialist surgeons.

    • mary-rose15619
      mary-rose15619 BillyFriend

      Posted

      Wow, that is indeed an amazing survival story. Thanks for sharing. May I ask how tall you are? The cardiologist decided to operate on my sister when only at 5.1cm due to her being petite. I believe that for women who are of a small size, then surgery starts to be considered from 5+ .
    • kristi18883
      kristi18883 mary-rose15619

      Posted

      I was told that they operate when it's 5 cm when there is also a duff aortic valve. Without the bicuspid valve, they would wait until it got to 5.5. 

       

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