Anyone here whos had an Aortic Root Enlargement?

[Harrysgran]

I had an AVR 4 years ago and was told they had to use a small valve ( 19mm) because my aorta was small . Ive had various symptoms of patient prosthesis mismatch and my symptoms have worsened. Ive just had an echo but have to wait to see the consultant on Dec 21st because the service is so stretched. The reg on my tel consultation mentioned Aortic Root enlargement but ive previously been told by the consultation that its an extremely risky major op that has a high mortality rate.

As you can imagine, im terrified and all this waiting is causing me so much anxiety. Im also upset to think of going through this without my husbands support and that of my family who wont be able to visit me. Not to mention the risk of catching covid in hospital. Id appreciate some reassurance from anyone whos been through this . Thank you

[GeorgeAlexander]

Hi there,My husband had a mechanical AVR and Aortic Root Replacement (his was 60mm) all in one op last year. Any operation has its risks and they are duty bound to tell you of them. Saying that they a magicians in what they do and they do these operations every day. We were terrified too and the waiting is worst. Added to that all the covid rubbish and not being allowed to see visitors I can imagine you are really feeling it. This group is brilliant for support. I hope you get sorted quickly x

[Harrysgran in reply to GeorgeAlexander]

Thank you for your reply. Yes, covid is making the whole situation much more frightening. It will be awful not being able to have visitors. I hope your husband is well following his op x

[francesw47]

Oh Harrysgran, this is a horrible burden for you. I had a similar problem - and you are the first person I have ever come across who knows what patient prosthesis mismatch is.

I think its really important that you get to speak to the surgeon who will actually do the surgery - and be persistent with the questions. Its important that you know what the decisions are and why.....

For what its worth, my own prosthetic valve was too small and was replaced with a larger (23mm) Edwards Inspiris valve and my aorta enlarged with a pericardial patch to accommodate the bigger valve. The op was not a walk in the park, but here I am....still annoying my children!

Please note, I am not a medic so can only speak from my own experience - and each of us is different. But I understood that there is a difference between aortic root replacement and aortic root enlargement. My aorta was enlarged. The two terms were used interchangably, which caused me a lot of unnecessary anxiety and confusion - but they are different operations, with different risks. You could ask the surgeon which operation is being considered and why.

The other thing is - is there urgency about this? Or will the surgical team put you on an elective waiting list for a while?

Its a worrying time for you so please, please come back after 21st and let us know what the outcome is. Good luck and keep in touch.

[Blackcatsooty in reply to francesw47]

Dear HarrysgranI had AVR this May and had to travel to london as no local hospitals were operating.

The staff were lovely. More than made up for the absence of visitors.

And, at the end of your recovery, it is down to you (and me) to get ourselves fit again. We cant unload our problems to friends and family.

So i can assure you that being in a hospital without visitors is fine. Everyone else is in the same boat,

The worst bit is the waiting.

Good luck

Colin

[Harrysgran in reply to Blackcatsooty]

Thank you for your reassurance. It cant have been easy for you and im so glad youre on the mend x

[Harrysgran in reply to francesw47]

Thank you so much for your reply. I had an echo on fri and was told i would see a dr with the result but the dr wasnt even in clinic ! I rang the secretary who said she was just making me an appt with the surgeon on the 21stDec. You are right. The waiting is awful. Im trying not to think about it. It wouldnt have been as bad had i not had the conversation some time ago and been told how dangerous it is and having had an AVR im not looking forward to going through it all again. Im not sure of the urgency i just know that im very breathless on minimal excertion now. So did you have PPM too? Was the aortic root enlargement worse than your first AVR? Im so pleased it was a success xx

[Harrysgran in reply to francesw47]

Hi, just an update after my appointment with the consultant today. Hes arranging another TOE but there are very few procedures taking place at our trust at the moment and even less surgery as he told me patients have been testing positive for covid post operatively. Anyway the good news is that he would probably be able to replace my valve via the groin ( TAVI) . It would mean that i would still have a small valve and a degree of PPM but he told me the mortality rate for Aortic Root Enlargement is 20% so naturally i am keen to avoid that and id be happy if i had the same level of fitness that i had 6 weeks ago.Also if i am hopefully able to wait untill more of the population have been vaccinated that s a huge bonus as that worried me greatly. X

[francesw47 in reply to Harrysgran]

Hello Harrysgran. That sounds like an excellent consultation and solution. I'm glad you won't have the worry of having invasive surgery just as COVID infection rates are becoming worrying again and also delighted to hear that he has decided to do a TAVI procedure. Sounds like a good outcome. I hope you can now relax for a while and enjoy what you can of the Xmas period. Do keep in touch and let us know how you are getting on and, of course, let us know when you have your TAVI. Best news.😀

[Harrysgran in reply to francesw47]

Yes really i hope the TAVI is possible🤞🏻I certainly feel less anxious and slept better last night! Wishing you and your family a good Christmas and hope that the world will look better in 2021 for all of us xxx

[Cliff_G]

Harrysgran, aortic root and valve replacement is a pretty standard operation these days, though my advice would be to find a really good surgeon who does a lot of these operations. Experience is key.

I had a full root and mechanical valve replacement with a section of ascending aorta (called a Bentall's operation), and I'm fine, as are many of us on our aortic dissection group. I was lucky enough to get one of the world's top surgeon (who did a lot more than just the root and valve).

I think your Consultant is rather overstating the risk as "extremely risky" and with a "high mortality rate". No, it's not removing an ingrowing toenail, but as I say, if you get an experienced surgeon who does many of these a year, the risks are actually quite low.

The Society for Cardiothoracic Surgery (SCTS) has a list on its web sites with surgeon statistics. scts.org/outcomes/ Follow the link to "Surgeons" or to "Units" (hospitals). That site has a lot of useful info generally

[Harrysgran in reply to Cliff_G]

Thank you for your advice ive just looked up my surgeon and his outcomes are within the expected numbers. Im going to research a little more( havent found that site the easiest to navigate but its probably me!)

[cjbroon]

I had my Thoracic Ascending Aortic Aneurysm. Mine was replaced from the root via open heart surgery at the Golden Jubilee in Clydebank, Glasgow last year. I was unlucky and had a few complications but have now made a full recovery. I was watch and wait for a couple of years prior to surgery. My Consultant and Surgeon were excellent.

[Harrysgran in reply to cjbroon]

Thats good to know. Im so please your op went well and youve recovered without complications, its reassurring to hear of success stories . All the best xx