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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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  • phil17356
    phil17356

    Posted

    Hi Folks,

    Thanks for all your support.

    Haven't heard anything from the LHCH yet.

    Maybe I have unreal expectations.

    I thought that as I have an 8cms aneurysm it woud require urgent surgical intervention since all the references to when action should be taken seem to be saying that anything over 5cms needs dealing with promptly. It's hard to see what else I can do to speed things along.

    Oh well I guess I'll just have to wait and see.

  • frances_15870
    frances_15870 phil17356

    Posted

    Dear Phil

    Mmmm did you contact them directly through the number on the website? I did that once and didn’t get s reply for weeks and then it was just go through your doctor so s slight change of tone. Have you got the keys to unlock the funds from your GP with a number and a password?

    • phil17356
      phil17356 frances_15870

      Posted

      Hi Frances,

      Yes, at the suggestion of the BHF I did phone the consultant's PA. She told me my GP needed to write a referral letter to the LHCH. I asked if that could be sent via email rather than snail-mail and she said most GPs send the referral by fax and she gave me the fax number. The GP then did just that.

      Actually the PA was very helpful and contacted me once the fax was received.

      Regards,

      Phil.

    • frances_15870
      frances_15870 phil17356

      Posted

      My GP went online downloaded some stuff,?from the NHS I guess,  then printed out forms for me with a number and a password  he said that was what was needed so the money could flow to LiverpoolHCH instead of LeedsLGI. I thought that was interesting. I haven’t activated it yet ... has that been done for you? How would we know... it might be able to be done by the admin staff on receipt of letter from GP? 

      I’m just saying because there must be some bureaucracy over funding before appointments can be made?? I’m just guessing Phil.

  • michael936
    michael936 phil17356

    Posted

    According to this paper someone had a 16cm AAA.....

    https://www.omicsonline.org/open-access/rerupture-of-abdominal-aortic-aneurysm-after-endovascular-repair-from-infected-endograft-1584-9341-12-3-5.php?aid=79931

    Quite incredible. But if I were you I'd be kicking in some doors. Hope it goes well.

    • phil17356
      phil17356 michael936

      Posted

      Hi Michael,

      Thanks for that, I'll read the entire paper when I get that time. Meanwhile it helps to put things in to perspective when you see that there are people much worse off than you are.

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