Looking for a silver lining!

[RozB1]

Hi,

I have a whopping great thoracoabdominal aortic aneurysm (TAAA) on which I'll be having surgery in 3 - 6 month's time. Not a pleasant prospect to say the least. Would be very glad to hear from anybody out there who's had a similar op.

[MichaelJH Heart Star]

Hello and welcome to the forum! My surgical history is a quadruple bypass last year. The thing to bear in mind although it is massive for us as patients is is the day job and routine to the surgeons. Waiting is the worse part as once you are admitted the sheer professionalism of the team around you puts the majority at ease!

How was the aneurysm discovered? Routine aortic scans are given to men when they reach 65 but not to women and, of course, you may be a lot younger.

[RozB1 in reply to MichaelJH]

Hi Michael,

Thanks so much for your very welcome reply although, of course, I'm sorry you had to have a quadruple bypass. Is all going well with that? My husband had a double one in 2002 and he said pretty much the same as you in that the absolute professionalism of the team takes a lot of the worry away.

My main concerns are that a) my aneurysm is both very wide and very long and b) that it's the rarest type, For once in my life I wanted something I owned to be completely common or garden so everybody had had a lot of practise at dealing with it!

You're right about women not being routinely scanned at 65 and my problem was a totally accidental discovery. I was having a problem flexing my right ankle and an orthpaedic consultant ordered an ultrasound of the arteries and veins in my legs. My appointment for this was between Christmas and New Year and, although I was about 40 minutes early for the appointment, I was called straight in by the sonographer. He told me that he'd had hardly anything to do all day as people had either cancelled or just not turned up for their appointments due to the holiday. He pronounced my legs all clear, and then said that as we both had plenty of time, he'd like to scan my aorta as he often found 'little surprises' in women of my age. He was right in my case (apart from the 'little') and I'll be eternally grateful to that very diligent man.

By the way, my ankle problem turned out to have been entirely my own fault for sitting with my legs crossed and inadvertently damaging a nerve at the back of my knee. A week of not doing so brought a 100% return to normal. I did feel an idiot!

Best wishes,

Roz

[Hidden]

Hi Pagan1,

I have a thoracic ascending aortic aneurysm which extends into the aortic arch but not large enough to require surgery yet thankfully. Mine is probably caused by my rare, auto immune disease as I have no risk factors for an aneurysm.

Given that thoracoabdominal aneurysms are rare does your surgeon specialise in these? I hope you get some helpful replies and that your surgery is uneventful.

[RozB1 in reply to Hidden]

Hi and thank you so much for your reply.

I don't have any risk factors for my aneurysm that are apparent and you're so right in that TAAAs are rare - particularly when, like me, you're female. Can I ask which auto immune disease it is that you have?

Yes, fortunately for me, my surgeon does specialise in this type of surgery. I'm with Southampton University Hospital which is such a centre of excellence in so many fields including cardiovascular - even my GP waxed lyrical about it!

[Hidden in reply to RozB1]

I have Behcets Disease which is one of the Vasculitis variants, it causes inflammation of the lining of blood vessels and can affect any size from capillaries to arteries. I also have Ankylosing Spondylitis which is a form of inflammatory arthritis.

Have they tried to find out why you have the aneurysm?

[RozB1 in reply to Hidden]

Well, that's certainly a new one on me, but from what you say about it, it does sound as if it could easily be a contributing factor to your aneurysm.

Further tests are being done to try to find a reason behind mine, but the consultant did say that sometimes they just appear without any reason that can be found.

I wish you well and thanks again.

[Dickydon]

Thanks for telling us what the abbreviation means.

[MyJinksy]

Is there a reason that women over 65 are not given Routine aortic scans

[RozB1 in reply to MyJinksy]

I think it's simply that aortic aneurysms are more common in men.

[Hidden in reply to MyJinksy]

There was some research into this last year but it’s not cost effective/ a good use of NHS resources. You would need to screen 4000 women to pick up 1 aneurysm and even then in a 1/3rd of cases it wouldn’t affect that person’s outcome.

discover.dc.nihr.ac.uk/cont...

Ultrasound can’t pick up thoracic aortic aneurysms which are higher up in the chest either.

[RoyM]

I was diagnosed with an ascending aortic aneurysms of 4.2cm in March 2018. I recently had a CT and Echocardiogram that showed an increase in size to 4.4cm. There is no doubt surgery is in the near future. Its worrying but one can only put your trust in the surgeons that consider this surgery to be " just another day in the office" but for us patients its a big deal indeed. Cheers Roy

[Cliff_G]

RozB1, you'll find a great bunch of people over at the Facebook group called Aortic Dissection UK Buddies, many of whom have had, or still have, aortic aneurysms. And yes, Southampton is one of the top centres. Good luck

[RozB1 in reply to Cliff_G]

Thank you so much for the information about the Facebook group which I'll be looking at later today.