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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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  • h_g
    h_g kristi18883

    Posted

    So pelased as I did not read the last note that you are waiting to undergo your oepration good luck will be praying for you too, God Bless
  • pablo123
    pablo123 kristi18883

    Posted

    Sorry to read all you been through, My position is full dissction with an anerisum 12c months ago, which appearse was unopperatable here in the UK under NHS, but have been researching other options and sites out side of the Uk which are more advaced being larger countrys hence more expertise and fo longer which that information was deleted by the moderator on this site it appearse, but does not supprise me and fits with a genrial concencuse of big brother to restrict info for suffers whom may wish to gain a fuller knowledge and understanding outside of the directive under NHS or gov wishes, so can not help and will not use this site again as I believe in freedom of information rather than higher critisum belonging to the dark ages or directives based on cost constrictions! Hope all goes well for you.
  • kristi18883
    kristi18883

    Posted

    Update number 567..lol

    I feel like I'm being fobbed off. I was told my surgery would be scheduled within 3 moths of my last test (which was near a month ago) and I'm not even on the waiting list. I called the surgeons office to see what was going on, and the secretary said h wanted to see me again, and made an appointment for July. I told her what the cardioligst said and told her I was willing to come to him, so she made an appointment for June, then a few days later, I got a letter saying my appointment had been changed to August???

    When a Doctor tells you, "if it's not fixed, it will burst and you will die" and your sat waiting to get on the waiting list 5 months later, with 2 more months until you see the surgeon agin...somethings not right.

    I feel lke I'm too healthy (besides the mild/moderatly leaking bicuspid valve, 5.1 cm anneurysm, lungs not holding enough oxygen).

    I'm going to see my GP on Tuesday, and I'm going to ask if I can see someone else.

    Any other advice, or anyone else have this problem?

  • denshep
    denshep kristi18883

    Posted

    Thanks for gettiig back to me. I. Went for a. Private consultation. In blackpool cardiac centre. The consultant did put my mind at rest to a certain extent. Im having a ecg. Soon and ct scan inthe new year. Thats brilllant that youre on the mend.
  • mariannesig
    mariannesig kristi18883

    Posted

    Hi Kristi,  I think you need to call your doctor and advise him/her that you would like to get the testing done asap and also tell them that you don't want to wait until March.  and that you would like it done asap,,  Hopefully that will get them moving quickly on this,,,
    • kristi18883
      kristi18883 mariannesig

      Posted

      Thanks mariannesig...but that was 8 months ago. I've had the surgery 30th June, to replace my BAV with mechanical valve, and repair the TAA. After a few re-admits with a-fib/tach I am well on the mend and been back to work for 3 months. All is well. But thanks for the concern. 
    • mariannesig
      mariannesig kristi18883

      Posted

      Thanks kristi, I should have read more of the replies..  I am so happy to hear that you are doing well...
  • sandra65273
    sandra65273 kristi18883

    Posted

    Oh dear. No wonder you are so upset. I have a somewhat similar situation, just not as urgent. I get followed yearly with an echocardiogram to check on my aortic valve, which doesn't close properly plus a cardiac CT with contrast to measure the size of an aneurysm in the ascending aorta of my heart. It first measured 4.125 and I was told 5 cm was the limit before surgery. Panic!!! I wanted it done right away but was told the dangers of open heart surgery were greater than the likelihood that it would burst. I've since learned that the measurement of an aneurysm is a bit subjective, and varies according to the person doing the evaluation. Sure enough, a subsequent CT showed it as 3.9. In 3 years it has not grown substantially. In the U.S., the size at which they operate is not a fixed number. Smaller people would be operated on sooner. Can you get a second opinion? Your care seems to be lacking.
  • Tez23
    Tez23 kristi18883

    Posted

    Hi, I'm 53 and was diagnosed with a 6cm aneurysm back in April following a scan. Had surgery at the end of June to replace the ascending aorta and arch, along with a double bypass. Conscious I might be hijacking the thread a little, but I'm happy to discuss all aspects of what happened and more recovery if it helps the discussion in any way.
    • mary-rose15619
      mary-rose15619 Tez23

      Posted

      Hi Tez, hope that everything went well and that you are fully recovered. sounds like you had quiet a few things done all at once. I am 56 with a 4.3cm ascending aneurysm, monitored annualy. I would be interested to know the background to your aneurysm. Was it familial (like mine)? At 6cm, did you have any physical symptoms?
    • Tez23
      Tez23 mary-rose15619

      Posted

      No, mine was first generation :-) I've always been monitored by cardiologists having had a congenital aortic valve condition which was eventually rectified with an artificial valve in 1996. The aneurysm was a slow burner really, picked up as something they kept an eye on. In February they felt that a scan would give them a better idea of its size (4.6 according to ECG results at the time) and the scan came back at 6cm. Cue a surgeon's appointment within a week and surgery about eight weeks later. The bypass was icing on the cake and made practical sense since I was already being operated on. Nine hours of surgery on the day, but eating porridge and drinking coffee the following breakfast time, such is the positive rehab of Papworth's HDU.

      Fully recovered now. Do I feel any better? In all honesty, no; simply because I never felt or displayed any symptoms pre-surgery, and of course now I still experience the occasional post-operative discomfort & light headless due to the blood pressure being kept low, to list but a few legacies of surgery. Small price to pay in the long run.

    • mary-rose15619
      mary-rose15619 Tez23

      Posted

      Thanks for sharing your experience. My younger sister had her aorta repaired about 2 years ago when it reached 5.1cm and her recovery has been inspirational. I just wish we knew why hers grew faster than mine and at what point might it have accelerated. Another sister has measured at 4.1 and also being monitored. All of us are slim and have healthy habits which makes it scarier as there is nothing we can give up or change to stop the aneurysm from growing. All the best to you.
    • sandra65273
      sandra65273 Tez23

      Posted

      Thanks for sharing your story. I'm fascinated since surgery could be in my future. Please tell me more about your recovery. How long were you in the hospital? I'm a bit worried since I'm allergic to narcotics and opiates. (I've coded 4 times on small amounts like 1 mg of Dilaudid, 1 mg of Stadol, Tramadol, and Morphine.) I can only take plain Tylenol. Even a Tylenol #3 (with codeine) makes me pass out for 7-8 hours. So after surgery pain control is a concern. I can get through it if I know what to expect. Just had a double mastectomy with only Tylenol, but I imagine heart surgery will be something else completely. Was your recovery smooth?

       

    • Tez23
      Tez23 sandra65273

      Posted

      Hi Sandra, in my case I had a pre-admission appointment where I met a whole host of people who'd be involved in my procedure, including the anaethetist, where allergies and general issues concerning pain relief and anaesthesia were discussed. I presume you should get a similar opportunity to voice any concerns or anxieties? At the end of the day they want to have the procedure go as smoothly and successfully as you obviously do, so I'm sure they'll come up with a solution.

      In terms of my stay in hospital, it was roughly eight days. I was admitted early evening the night before and then went into surgery at 9am the following morning. Surgery was free of any hitches, helped by the fact they didn't in the end need to replace the aortic root or change the mechanical valve as both were still in good shape, and lasted just over 9 hours; by midnight I was breathing for myself again. Twenty four hours on from surgery I was eating breakfast. Forty eight hours after surgery (though might actually of been the previous day in fact) I was stood up and walking on the spot. That same day chest drain removed and dispatched from HDU to a cardiac ward. Have to admit that I felt better day 1 than I did day 2, I'd started to feel rather nauseous - hardly surprising given I was progressing at a rapid rate. Had a few minor blips with the heart pacing over the next few days and had pacing wires monitoring and correcting my rhythm. While this was a bit disconcerting, given what I'd gone through up to that point, I'd have gladly accepted a insertion of a pacemaker (a minor procedure in the grand scheme of things. Overall sleep was my biggest issue, my brain just wouldn't let go and allow me to rest; don't think I really slept until I got home! By day 4 (?) post-surgery the OT had me walking (still wired to a pacer) around the ward - that was tough and felt like a marathon to begin with! Progress fine through the rest of the week and could've been home day 7 post-surgery, but in the end was discharged the following morning, so day 8 post-op.

      Procedure took place June 26. Passed fit enough to drive mid-August and well enough to return to work mid-October.

      Skimmed through the post admission recovery there. Happy to add some more detail or answer any other questions. Just fire away. 

    • sandra65273
      sandra65273 Tez23

      Posted

      Tez23, That was so helpful. Thank you for your expert information.
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