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8cms Aneurysm (TAA) and Still Waiting of Treatment

Posted , 13 users are following.

phil17356
phil17356

HI Folks

I was diagnosed with an 8cms diameter Thoracic Aortic Aneurysm (that’s bigger than a coke can) at the end of July in Cheltenham General.

The small amount of research I’ve done suggests that anything greater than 5.5cms requires urgent attention.

Cheltenham immediately sent my details to Bristol Royal (BRI) who did not respond with anything meaningful for nigh on a week. The BRI called me in for another CT scan and gave me an appointment to see a consultant on the 28th of September. That will be 9+ weeks since diagnosis and I haven’t even got a sniff of a date for surgery.

So it seems to me that Bristol Royal are dragging their feet meanwhile I could rupture at anytime and that would “Good Night Vienna” for me.

Therefore I have asked to be referred to the Liverpool Heart and Chest Hospital, as they seem to have an enviable reputation in this field along with the Royal Brompton, and this is now underway.

I think it’s fair to say that I’m quite anxious.

Have any of you guys out there got an aneurysm in the region of 8cms? If so what's happening with you? How are you coping?

or am I being unnecessarily alarmist?

I’m really quite worried.

Regards,

Phil.

0 likes, 38 replies

38 Replies

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  • roy72611
    roy72611 phil17356

    Posted

    Good morning Phil.

    8cm ascending aorta is on the large size but certainly not unusual. We are all different and what is large for some people is not for others. I have a 5cm ascending aorta and I am on a monitoring programme at the Liverpool Heart and Chest Hospital. ( you have made a great choice) when you get your appointment, trust them and do what they advise. Mean while avoid doing anything that puts strain on your aorta, no heavy lifting, remain calm, no straining on the toilet. Easy to say it but try not to worry. You will be fine Phil. Good luck. When you do have surgery there are rooms available on site at Liverpool Heart and Chest hospital to enable your family to stay. Cheers Roy

    • phil17356
      phil17356 roy72611

      Posted

      Hi Roy,

      Thanks for that.

      I'm concentrating on staying positive and trying to carry on as normal whilst limiting my activities to "safe" levels of exertion  ... in all departments!

      The LHCH now have my referral letter (13:00 on Monday 10th Sept) but I have yet to be formally told that they will accept me as a patient.

      Are you local to the LHCH or did you, like me, come from outside the area?

      What is your experience of how quickly they act?

      I have asked to be seen by Mr. Mark Field, does that name ring any bells with you?

      I saw on the LHCH website that they have some accommodation for relatives but I guess it's first come first served. I know my partner is anxious to be close by and involved asmuch as she can be.

      Thanks again for your kind comments.

      Regards,

      Phil.

    • roy72611
      roy72611 phil17356

      Posted

      Hi again Phil.

      The LHCH acted very quickly when the dilation was spotted during a unrelated CT. I was seen by the specialist unit at LHCH within two weeks. Mr Field is the lead consultant in the specialist unit. There are three other specialist surgeon in his team and the all have an enviable reputation in their field. I live outside their normal catchment area. I also visit the LHCH due to having AF so it was a natural progression that asked for my heart treatment to be continued at the same hospital. I live about 80miles from the LHCH, The hosputal is known locally as "Broadgreen". Take care Roy

    • phil17356
      phil17356 roy72611

      Posted

      Hi Roy,

      Thanks for that.

      I'm certainly hoping that the LHCH will take me on because the hospital and the consultants are held in high esteem and I want try to access the best I can, but then again doesn't everyone? So I'm guessing that the LHCH have a large number of referrals to wade through.

      Interesting that you should mention AF though, I too have AF. I had ectopic heartbeats for years but this degraded into AF a while back, can't remember the exact timing. Fortunately I was already on Warfarin because of the prosthetic heart valve (hmm .... that makes it post 2005 when I had the prosthetic heart valve fitted) so I was already protected, as far as possible, from strokes etc. My GP just noted the AF, put me on Slozem (dilitiazem) to slow my heartbeat down and sent me to the cadiologist in Cheltenham. Basically that's all the treatment I've had for AF ... I'm thinking now that I should be on some regular follow up with the cardiologist. I'll check into this.

      I follow the AF forum on this website and it seems to me that I get off lightly. I have a permanent irregular heartbeat, I don't get more than 10 beats in the right place. I get palpatations now and then but nothing serious. I just get on with life and ignore it all, some folk seem to have regular "episodes", whatever that means, and get carted off to A&E.

      Thanks for your feedback Roy and I hope your journey through aneurysm and AF is as smooth as it can be with a positive outcome.

      Regards,

      Phil.

    • roy72611
      roy72611 phil17356

      Posted

      Thanks Phil.

      I too have permanent AF, I only control the rate with Bisoporol at 2.5mg I also take Apixiban one of the new anticoagulants. I was considered for an Ablation at the LHCH but it was felt the risks of an ablation far outweighed the benefits, primarily, I am symptom free and am able to walk, cycle, swim, climb etc without any real problems apart from the ageing process (i am 71). The LHCH have been fantastic with their guidance and advice. There is also a large team of Electrophysiologist and Cardiologists at the hospital. If you get accepted and I have no reason to think you won't you will be well looked after. It is a friendly hospital and the staff in my view are a tremendous asset. Take care. Roy

  • Cottonclan
    Cottonclan phil17356

    Posted

    Phil

    i can recommend the Queen Elizabeth hospital in Birmingham. Mr Jeorge Mascaro is the leading Aortic surgeon there, and recently operated on me. It is on the same level as LHCH. 

    There is a group of us who are part of the new Aortic Dissection Awareness Committee (Uk & Ireland) and we are getting to know many of the leading Aortic surgeons. Just to follow up, we have an amazingly supportive group of Facebook which anyone with Aortic issues can join....the group is called Aortic Dissection UK buddies and you would be welcome to join, as would anyone on here, with Aortic Dissections, aneurysms or other related conditions

    best wishes

    Anne . 

    P.s. take a look at www.thinkaorta.org. 

    • phil17356
      phil17356 Cottonclan

      Posted

      Hi Anne,

      I did wonder about the Queen Elizabeth since that's as close if not closer than Bristol to us .. we live just to the north of Tewkesbury. I opted for the LHCH because they seemed to be talking sense to me, provide masses of helpful information and the QCC gave them a green rating ... unlike some other well known leading thoracic heart hospitals.

      I will certainly give Aortic Dissection UK buddies a look in but I'm not very good at social media ... it seems like an oxymoron to me ... how can you have any real relationship in cyberspace? Surely it's a "virtual" relationship and as such can never be real.

      Be that as it may I have embraced the cyber world for getting on for 45 years now, being there at it's inception and having used it in my professional life since the beginning ... so I'll see you in cyber space!

      Regards,

      Phil.

  • xtine
    xtine phil17356

    Posted

    Dear Phil,

    I agree with Roy. There is nothing set with this it can happen when very small and people with very large never have a problem. So high anxiety is the last thing you need! Statistics are weird we all know that they are not predictive.

    • phil17356
      phil17356 xtine

      Posted

      Hi xtine,

      Yep, I know you're right. I'm usually pretty up-beat but sometimes it seems that the little devil on your shoulder is shouting just that little too loudly for you to hear common sense ... if you know what I mean.

      I'm dealing better now though thanks to people like you and the others on this thread giving me their support.

      Thanks you!

  • james48800
    james48800 phil17356

    Posted

    I have to say, my surgeon would treat an measurement of 8cm as an emergency. She is excellent, I only see her once a year now, and being monitored and holding steady for the time being at 4.8 root and 4.6 ascending. She plans on operating when and if I break the 5cm mark, and certainly below the 5.5 cm mark.

    That said, maybe on the 28th they will send you down the pipeline. Sadly, they tell you "don't worry, don't feel stress" and then "we will see you in weeks, or months from now."

    The truth is, however, loads of people live a long time with huge aneurysms without ever knowing it. You know it, can baby it and do your best to keep your BP low and get to the date. 

    • phil17356
      phil17356 james48800

      Posted

      Hi James,

      Thanks for your thoughts.

      At first sight one thinks that one is "knock knock knocking on heavens door" to quote Bob Dylan but it's comforting to know that others have passed this way before and survived.

      Now, I'm just keeping myself calm, avoiding contentious situations and chilling big time. My BP has never been high but then as soon as I was diagnosed with a heart murmur and a dickie aortic valve the Doc put me on Ramipril to ease the pressure on my atrium and the aortic valve, so BP shouldn't be a problem.

      Thanks again James.

  • frances_15870
    frances_15870 phil17356

    Posted

    Back to your hub thing Phil. I realise that Leeds general infirmary is a cardiac hub and they have monitored very well I have have full genetic testing and 2 MRI scans since they discovered it by echo just over a year ago. I will go to LIverpool Heart and Cest Hospital only because they specialize in thoracic aneurysms whereas Leeds doesn’t have a separate department. However the geneticist consultant said she would probably go to LHCH in my situation but I was definitely to go to Leeds if it ruptured or dissected...as time would be of essence. 
    • dixitworld
      dixitworld frances_15870

      Posted

      Hi Frances what they found in your genetic testing results? anything meaningful which determine when to operate? What is your surgeon suggesting when they will operate on it? What is your age?
    • frances_15870
      frances_15870 dixitworld

      Posted

      Hi dixitworld

      I am 69

      My dad died of ruptured abdominal aneurysm- dead on arrival at hospital and my brother died of a vascular event ( not sure exactly what) on an  aeroplane over Italy last year on way to daughters wedfing. My dad died the day after a car crash in which the passenger door with his grandson was hit. Both died it seemed to me through high Emotional stress. 

      Anyway they thought it would be worth looking for genes, they are looking for 28 though they reckon there are many more that haven’t been identified yet. None were found but still recommended screening for all my first degree relatives. (none of them  have greeted this news with thanks !)

      Do it is familial rather than genetic. 

    • frances_15870
      frances_15870

      Posted

      Last line should read

      SO it is familial not genetic. 

      It’s s gine distinction but means they haven’t discovered all the genes yet. It was a blood test searched the whole genome and took 4 months. It is true if they had found faulty genes they would probably treat earlier. But I was glad to tell my kids that they hadn’t found anything.

    • phil17356
      phil17356 frances_15870

      Posted

      Hi Frances,

      Yeah, I'm much of the same opinion ... the LHCH are setup tp deal with thoracic and cardiac cases ... if mine blew then I'd probably be rushed to Gloucester and they would do what they could in the time ... I've been told I'd have about 20 minutes before lights out but who can be that definitive? I live out in the Styx so just getting to A&E would take extra time as compared with those living in town.

      I think the NHS are very good when it comes to emergency type situations.

    • phil17356
      phil17356

      Posted

      Hi Frances,

      Just to be clear I was responding to your post above about "Back to your hub thing Phil."

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