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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

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  • frances_15870
    frances_15870 phil17356

    Posted

    Dear Phil,

    how did they find out? Did you have symptoms? I agree with you about going to LHCH they do seem the best with a team just for ascending AA’s. It’s hard not to worry about....tell us more

    • phil17356
      phil17356 frances_15870

      Posted

      Hi Frances,

      Nope I didn't have any noticeable symptoms at all; however see later on.

      I was in hospital because of rectal bleeding, turned out to be because of diverticulitis. This self-healed very quickly; apparently 95% of them do. The did a ct scan of my abdomen to locate the bleed but on the periphery of the scan some alert consultant noticed the TAA. So they scanned me again and then decided to refer me to the BRI.

      In hind sight maybe I did have symptoms. I also have AF and at the moment I’m a bit sedentary (or as we experts put it, lazy!) and been finding that I was getting out of breath more easily. I put this down to the AF and generally being unfit. However, maybe, just maybe, the aneurysm was a component of my breathlessness.

      Regards,

      Phil.

    • frances_15870
      frances_15870 phil17356

      Posted

      Hi Phil

      I increasingly am beginning to think that breathlessness is a sign but it is not accepted as one. It seems the only signs the NHS act on is pain but that is probably more a sign of dissection... in the US they act far more quickly but that is because the insurance companies pay .... I think TAA’s are pretty much swept under the carpet here but there is excellent care for abdominals (AAA’s) with automatic scanning for men at 65 if they wish ( tho not for women...). That operation is a lot smaller than open heart surgery.

      I have just got the keys to unlock treatment at the LHCH from my GP but haven’t applied yet. It’s a long journey and mine is only 4.9cms. 

      I have learnt not to let myself get out of breath because that causes an attack which is so distressing and hard to describe. My dilation (my current cardiologist prefers that term) is in an unusual position apparently with the biggest diameter by the place where the pulmonary artery branches off from the aorta. I am on montelukast which has stopped the attacks most of the time. It is an asthma drug which perhaps this kind of breathlessness is, a rare type of exercise induced asthma, I have no wheezing. But it has helped.

      I’ll read your other answers now because you have probably explained even more. Keep taking it easy 😎🙃

    • steve29899
      steve29899 frances_15870

      Posted

      Frances 15870,

      I am curious to your breathing difficulty as it relates to the dilation (my Doctor also prefers this term). Am I to understand that you are not asthmatic just being treated with asthma medicine?  I ask as I was diagnosed with exercise induced asthma a couple of years ago at age 57 which never made sense to me.  Now at 59 I am dilated to 4.3 at the root and was wondering how they would define the breathing as an aneurysm symptom or actual asthma.

      Thanks,

      Steve

      Thanks,

      Steve

    • frances_15870
      frances_15870 steve29899

      Posted

      I don’t know Steve. But I had this weird breathing difficulty then I discovered that there was a Swedish study which linked a high level of leukotrienes with aortic aneurysms and that an asthma drug which had no side effects and was now cheap was seen to stop the growth by being a leukotriene antagonist. It seems that leukotrienes figure in both aneurysms and asthma. The drug is called montelukast and I now take it and my breathing problems are so much better with the added  hope it is stopping the growth of the dilation. Of course these were mouse trials - I can send you a link - and won’t officially be treatment for humans for years, so asthma and montelukast I have.  Does that help? 
  • timothy40679
    timothy40679 phil17356

    Posted

    8 cm is extremely large. You're right to be concerned. I had a 5.3cm upper thoracic aneursym that dissected at 5.3cm. I was admitted for emergency surgery that same day. My mom had one in the same location and the doctors let it grow until it was over 6cm, then did surgery.

    I've never heard of a 8cm+ aneurysm.

    I think you need surgery ASAP! In the meantime, don't strain yourself- don't lift weights, don't do any running, etc. You should probably be on some serious blood pressure meds and on a beta blocker to keep you alive until you can have surgery. Do you have a regular doctor that you see for less serious stuff? In the US we call them primary care physician. Maybe you can see that doctor and get on some blood pressure meds ASAP.

    I'm stunned that Cheltenham General didn't admit you for emergency surgery that same day!

    I don't want to scare you too much but 8cm is very serious. Your medical system is different then ours. Is there no way to expedite your appt with Liverpool or Royal Brompton?

    • phil17356
      phil17356 timothy40679

      Posted

      Hi Timothy,

      Thanks I think Cheltenham acted very promptly, let me explain. The NHS in their wisdom has concentrated all the thoracic and cardiac resources into regional hubs. I my case that hub is the Bristol Royal Infirmary which is about 45 miles away, it might not sound like far to you but if the aneurysm blows then that’s it. The upshot of this is that all the outlying hospitals in a region don’t have access to that expertise on sight and so have to refer to the central hub, i.e. the BRI. This Cheltenham did as soon as they knew I had a TAA.

      It was the BRI that was slow to respond.

      The Liverpool Heart and Chest Hospital now has my referral and so I’m awaiting some development from their end.

  • dixitworld
    dixitworld phil17356

    Posted

    Hi Phil,

    Dont feel that something will happen to you in these days. If you feel and got anxious , things changes. Always remember these many days you didnt knew about it and you were doing all these things which you should not.

    Now you know it and you are going to get it fixed as early as can is the best and you will take care of your blood pressure and not picking heavy things. Nothing is going to happen to you.

    Best is to try to know the reason of aneurysm in the mean time you get surgeon appointment. Do you have bicuspid valve or any other genetic condition.

    8 cm is huge but dont think everyone has complication at this stage. Research shows 50% of people have complications at this point , means remaining 50% wont have complication (you belong to that group).

    Timothy has familiar history of aneurysm and hence it dissected earlier than expected.

    Also i have read articles for people with 10 to 16 cm of aneurysm also. So just try to lessen the anxiety and try to do best as you can 

    • phil17356
      phil17356 dixitworld

      Posted

      Hi Dixitworld,

      Thank you for your kind and very supportive comments, it means a lot to me and has helped me to adopt a more pragmatic view of events.

      I had a heart murmur when I was younger that turned out to be a mal-functioning aortic vave. I think that valve was either bi-cuspid from birth or it was tri-cuspid and two cusps fused renedering it bi-cuspid. That was replaced in 2005 with a bi-carbon bi-leaflet valve, i,e. a prosthetic heart valve so I'm on warfarin for life. However I believe that there is some evidence that there is a link between bi-cuspid aortic valves and TAAs.

      As for any familial element in this; my brother had an 8cms AAA which was noted and repaired and he's fine now. I've had my abdominal aorta checked and it's normal, 3.5cms I think, so no worry there.

      I'm just going to stay positive and moving onward and upward!

      Regards,

      Phil.

    • dixitworld
      dixitworld phil17356

      Posted

      How old are you Phill. I am also in similiar boat as yours. I was also diagnosed murmur in child. Replaced bicuspid valve in 2010 with mechanical valve at age of 23. Currently at age of 31 have aneurysm of 5.2cm. Doctor have contradiction of when to operate, few say at 5 cm , few at 5.5. 

      Surgery is inevitable for bicuspid valve patients like us.

  • Curlicue58
    Curlicue58 phil17356

    Posted

    I had unknowingly a 5.2 aneurism in December. I went to emergency in NY at Lenox Hill Hospital, I thought I was having a heart attack. I was taken upstairs to a roomful of people. One of them was the head of robotic thoracic surgery. My advice to you would b to go that heart hospital ASAP. They usually remove it at 5.2. I had a terrible internist who never sent me for an X-ray of my heart or chest. I wasn’t on blood pressure meds and I had anxiety for which I’m taking meds since 2005. Also a stressful job as well. I don’t want to scare u,mine burst the Dr said 12 hrs later I would have died. Lucille Ball and the actor John Ritter died of the same thing.
    • phil17356
      phil17356 Curlicue58

      Posted

      Oh Curlicue58, how lucky you were! I've been told that if mine blows then it's "good night vienna" within 20 minutes but it's good to hear of someone who beat the odds!

      I'm certainly going to keep my eye-on-the-ball and kep the pressure up, after all, it's the squeaky wheel that gets the oil!

      Keep on clelebrating life Curlicue58.

  • Lifeisgood999
    Lifeisgood999 phil17356

    Posted

    Phil, I’m worried for you. PLEASE SEEK IMMEDIATE MEDICAL ATTENTION! 8cm is quite large. Be careful about stress and straining yourself. The doctors there should know better. 

    We are all on this forum to support each other. Keep us posted.  

    Praying for you ❤️

    • phil17356
      phil17356 Lifeisgood999

      Posted

      Thanks so much for your support, it's very much appreciated.

      I will certainly keep you all posted as to what happens to me ......... I might go a bit quiet whilst I'm fighting the good fight but I will post eventually about my experiences.

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