Aortic valve replacement now aortic vessel 5cm

[Lincolnimp66]

I had a aortic valve replacement 5 years ago during a routine ecg 3 months ago they found that the aortic blood vessel coming from heart is 5cm .Has anybody else had this operation and is it more serious than the valve operation I had can’t believe I’ve got to go through another big operation if it gets any bigger.

[Isobel1]

I had an aortic valve replacement and an operation to replace part of my aorta last May . Bad luck having a 2nd operation, but I guess it's better than having both together .I wouldn't say an aneurysm repair is any worse than a valve replacement .

I'm over 70 and got through it with no problem .

I know it's easy for me to say , but try not to worry too much about prospectively having the operation . Good luck!

[Fredders]

When I had my first AVR I was told that I may need part of my aorta replaced as it was distended, but they wouldn't now until they went in. As it was they were able to wrap it with dacron. I had to have a second AVR in 2017 as my first tissue valve had started leaking. I had a mechanical valve second time and my aorta was still fine.

I take it with a name like that that you are from Lincoln, me too! Did you have your surgery at Glenfields?

Wendy

[Lincolnimp66 in reply to Fredders]

Yes I’m from Lincoln and I did have my surgery done at glenfield I was very impressed glenfield.

[Fredders in reply to Lincolnimp66]

I was given the choice of Nottingham or Glenfields and chose Glenfields. Couldn't fault the staff, first class. Just hope I don't have to go back though, two heart surgeries is quite enough! 🤪

Hope you won't need surgery any time soon.

Wendy

[Lincolnimp66 in reply to Fredders]

Yes I was very impressed with Glenfield’s couldn’t fault it in anyway .I go back to Glenfield in April for a CT to see if it’s got any bigger it’s at the limit now at 5cm fingers crossed it hasn’t got any bigger.

[JulianM]

I have an enlarged ascending aorta diagnosed 3 years ago with no valve issues, currently around 4.8cm with a threshold of 5.0cm, looking at surgical options.

I still find it surprising there is no specific UK support group for ascending aortic aneurysms, and fairly poor patient information on the subject, though I've found out a lot from meeting and listening to survivors of aortic dissections, many of whom have been through multiple surgeries.

First thing I'd say is, echo is great for checking valve function but a gated CT with contrast is definitely the way to find out what it really looks like. I found it extremely helpful to see a proper 3D image of my own aorta, and I hope that your team at Glenfield will be able to show you one and talk you through what they make of it and how they have measured it.

Second thing is, do ask about different options.

The 'standard' operation would be replacing the ascending aorta with a tube; as someone else mentioned, there might be an option to place the tube around the aorta instead (the 'Florida sleeve' operation).

You might be a candidate for PEARS surgery, where a custom-made polypropylene mesh - rather like a knitted support stocking - is placed around the outside of the aorta, without interrupting the blood supply.

This has the advantage over the Florida sleeve that the mesh gets incorporated into the wall and there's no risk of distorting the shape of the aorta inside it, or of later movement. It has the advantage over replacing the aorta that there's no risk of bleeding from the join and it doesn't need hypothermic surgery.

There are full details, including a range of patient experiences and links to medical papers and some media coverage, on the website of exstent.com, which also lists the centres which offer the procedure. More than 500 operations have been performed to date, with an excellent safety record, and while most of them cover the entire aortic root, it would be possible to support the ascending aorta from the S-T junction to the arch if that made more sense, given your valve replacement and the shape of your aorta.

The operation was originally developed for people with Marfan syndrome, but has been used to support the aorta after the Ross Procedure (where the aortic valve is replaced by the pulmonary valve) and for patients with bicuspid aortic valves, though mostly (so far as I know) in cases where the valve is preserved. Glenfield isn't one of the centres, though, so it would mean a referral.

It is possible that the shape of your aortic root and aorta, given the valve operation you have had, would make this option unsuitable for you; it's definitely worth discussing, however.

Very best of luck, whatever you find out and whatever you and your doctors decide to do.

[Quoideneuf in reply to JulianM]

Had same - aneurysm on ascending aorta and had the surgery in April to replace it all - plus the arch. 8 months on feeling slightly adrift but read comments on here and find it reassuring. Good to have post from someone with same condition. Good luck.

[Quoideneuf in reply to Quoideneuf]

My aneurysm was annually expanding slowly over the 3 yrs once diagnosed and I ignored it all thinking 5.5 was the magic number and i was way off the mark to need surgery. But this time last yr I had a letter saying i was on the urgent surgery list. A massive shock tbh. Just cldnt believe it was suddenly critical. But the aneurysm appears to have accelerated the expansion so the aorta rupturing was suddenly imminent. I wonder if having MRI and CT scans and gated scans delivers different readings!? I used to be scanned at RUH. Bath and results were patched over to BHI annually. Once BHI got me being scanned by them the measurements were bigger. Either way the op is done and here I am. ❤️NHS.

[Lincolnimp66 in reply to Quoideneuf]

How did your operation go ?.I can’t stand the waiting for the inevitable to happen part of me just wants to get the operation over and done with instead of just waiting for it to get bigger.

[Quoideneuf in reply to Lincolnimp66]

It went really well. And I felt the same about just wanting it done. But waited from Jan to Apr for the call and that was hard. Actually mainly in terms of managing my family’s anxiety more than mine. Tricky to plan anything ahead so felt like life was on hold!?

[Lincolnimp66 in reply to Quoideneuf]

I’ve got my next CT scan in April which seems ages away.My aortic measures 5 cm it was 4.7 a year ago so it’s growing fairly quickly.I might be wrong but I don’t think there is any symptoms if it has got any bigger .

[Quoideneuf in reply to Lincolnimp66]

Sds similar with a sudden massive jump to 5.5! Because my aneurysm was an ‘incidental finding’ (when I was being screened for something else) - i never had any symptoms that I was aware of and so didnt long for an operation to make me feel better But the more I read and talked about it ( my osteopath is now expert on my condition) I did want it all sorted fast. Actually the osteo gave me a useful podcast link. Will see if I have it.

[Lincolnimp66 in reply to JulianM]

Thank you for all the information you have mentioned.I didn’t realise there was other options available and I’ll be definitely asking about them when I have to have the operation.Thanks again

[Robfromwales]

I understood the hinge point for surgery in non syndrome patients or in non fast growing aneurysms was 5.5?

[JulianM in reply to Robfromwales]

It's a judgement call. I'm non-syndromic but still considered to have a genetically-based condition, and my threshold has been set at 5.0cm by specialist consultants and surgeons in an adult congenital heart disease team in London. I was last measured at 4.8cm ...

There are new international guidelines due from the American College of Cardiology and others in the second quarter of next year, and everything I've seen since the last ones (in 2010) would point towards 5.0 as the general recommendation, on the very important condition that surgery is carried out at by specialists at a relatively high-volume regional centre.

[Robfromwales]

Thanks Julian. North Bristol NHS Trust and most of generally available info that I read since recent diagnosis is 5.5cm. But as you say / things can change as more info available. IfUSA guidance comes out with 5cm trigger can you post here?

[JulianM in reply to Robfromwales]

Most definitely! One of the aortic dissection charities, Aortic Dissection Awareness UK and Ireland, is planning a September meeting in London on the future of aortic surgery, in partnership with UCL, and I'm hoping that one theme will be looking at how the NHS responds to changing international guidelines and how patient perspectives can be taken into account in that response.

[heart_surgery]

JulianM and the other posters here are giving accurate and helpful information. I researched trigger measurements prior to my surgery and 5 cm is the point at which surgeons start taking a keen interest in taking action unless you're Marfans when the trigger point is less around 4.5. I had a dilated aorta for 10 years or so and in October 2020 I had a micro disection I was at 5.5 cm ( for a long time the standard advice is "go to A&E" if you have chest pain which I found not so reassuring!). I knew the day would come for surgery but it makes it no less daunting. Giving my precious body to complete strangers wasn't easy for me. Most people know their postman better than they know their open heart surgeon.

In preparation for my surgery I researched PEARS and got a referral to the Brompton where the procedure was conceived and the first operations were performed. I was admitted in early August 21 I had odd consultations with my surgeon but I still believed I was going to have PEARS the stent was made and everything was prepared (two external stents are made usualy 100% adn 95% scale so the tighter one is fitted if it can be). 3 months prep for scanning for the 3d model and fabricating the unique stent.

However in the event my surgeon discovered when I was on the table that my ascending aorta was angry and inflamed. He made the decision then to cut out my ascending aorta and replace it with a plastic dacron implant. So I was chilled and heart stopped for a few hours whilst they fitted the implant. At the time I found the anxiety leading up to the surgery was difficult but I was happy in the thought that I would have leass invasive pears... when i came round my surgeon said he had to abandon the plan and fit an implant instead which was a complete shock. I suffer anxiety that the join between the dacron plastic and the organic aorta will leak and fail in time... This is really difficult for me to shake off I worry about it all the time and feel at risk.

I had a lot of MRi scans prior to surgery when my dilation was measured, I assumed that was clear information but a lot of surgery is decided when the surgeons can physically see what the conditions are and I had no idea that was the case.. I thought it was much more predictable than that, I think the rate is 5-10% of operations are changed mid surgery.

To be fair it stands to reason that plans have to be changed as circumstances dictate and being a tradesman I fully understood that.

It's a difficult road and every one has a unique experience of it but keep your self informed try some calm deep breathing and try assertive questioning when necessary, try to "go with the flow" try to be calm and you will get the best result possible for your condition. We are all very lucky to live in a country which has a proud history of heart surgey and has a world leading centre for cardiac surgery.

All the best

Tim