Aorta Stenosis

[netie54]

can anyone give me an idea of the length of time an Aorta Stenosis Valve takes to get from moderate to severe. Many thanks.

[Rhinos67]

HiI was totally unaware that I had a heart defect or Aortic Stenosis until I was at the severe stage.

I'm in a Facebook group called UK Aortic and Heart Defects Pre and Post surgery though and know that others have gone through the journey of being diagnosed years ago with mild stenosis. Maybe think about joining. I'm sure that they can advise and reassure you

Joanne

😊

[netie54 in reply to Rhinos67]

thanks for that I think I will.

[Rosie1066]

I lived with Aortic Stenosis most of my life having been born with congenital heart disease and waited sixty years before i finally got a a heart valve replacement. When I was young the aortic valve replacement operation didn’t even exist! But it was certainly worth waiting for and now I lead a perfectly normal life which is something I could not do when I was a child.

[netie54]

Hello Rosie Thanks for you swift reply. I can't get mine replaced until it is classed as severe . I'm glad you're feeling well since you've had a new valve.

[Cat04]

It is very individual how stenosis progresses and is dependent on other factors too, like whether the valve is bicuspid. It may never get to severe but you will be given surveillance echocardiograms to monitor its progression and the cardiology team will decide at what intervals to have them. Mine was under surveillance for 15 years before my annual echo results showed sudden & rapid deterioration in August 2022. I had a replacement valve in January 2023 by open heart surgery.

[Ageingfast]

dear Nettie

I was monitored annually. I went for about 5 years then I moved from mild stenosis to moderate. But then I went from moderate to severe in a few months. I am bicuspid which means my valve has two leaflets whereas most valves have three leaflets.

Then I had valve replacement, which was a brilliant op.

Can I urge you to not use Dr Google for stenosis advice purposes. Stick with nhs or BHF sites.

Best wishes

Sooty

[Jules2021]

Hi netie54My son was diagnosed with a bicuspid aortic valve when he was one year old. At the time aortic regurgitation was mild. Yearly echo etc and he is now 14. At his last echo it is now moderate-severe and awaiting another mri to see how heart is coping etc.

As cat04 said,it will vary from person to person how long it takes to get worse and it also depends if the person is symptomatic as to wbether they will replace the valve quicker as some people can find things difficult with mild stenosis and others plough on with severe and no symptoms.

All the best. Jules x

[WeaverShaz]

Hi. I was diagnosed completely out of the blue in 2019 when it had reached the moderate stage. I had an AVR in 2021 when it reached severe. At least that gave me a couple of years to get my head around the fact I had a heart problem. Good luck. Sharon

[netie54 in reply to WeaverShaz]

Thank you for you swift response. I've been moderate for quite some time and I have been trying to get my head around having the operation.My cardiologist has been monitoring its progression for many years and I am going for another echo later today. I go private because nhs will only do it at intervals of 18 months and I need to keep a closer eye on things .

[WeaverShaz in reply to netie54]

18 months seems a long interval. I was on annual checks on the nhs but under a cardiac nurse. I only saw a consultant when she felt it had reached the threshold for replacement.

[netie54 in reply to WeaverShaz]

That's seems to be the norm now. I think they are trying to catch up with all the cancelled old during the pandemic. I'll post following my echo today.

[WeaverShaz]

The operation is a scary thought, but I trusted they wouldn’t be doing it if it wasn’t essential. The worst part was turning up and having it cancelled twice but once I knew it was going to happen I just went with the flow. There is a very informative series of 3 videos on what to expect, from a patient. I’ll try and find the link. Good luck with your scan. Sharon.

these videos helped me. youtu.be/EIcs-Zhjpp0(Not working as expected?)

[Thonglor]

My moderate stenosis was discovered in 2013, but could presumable have been around and unknown for several years before that. After annual echocardiograms it reached Severe stage in 2019, so 6 years after diagnosis but even then it was only the tests that told me, not any meaningful symptoms at the time. Had the replacement valve at the end of 2021.

[Astronomyrules]

Hi netie54, I think everyone will be different, but my aortic valve took 18 years to go from moderate to Severe, although I think it was severe for some time before being picked up as it wasn't monitored for the last 9 years due to some glitch in the system. I had a new valve by Trans Apical TAVI in 2021 and am fine now, valve -wise. Which ever kind of op you eventually have it's never as bad as you think it will be.

[Junehope]

Hi. I'm 47 and mine is now severe, congenital so it's been progressing since young age. It's classed severe but still not quite there for surgery.... its been on the cusp for 7 yrs at severe.. just a matter of time I guess. The reassuring thing is bei g reviewed 6 monthly and toldnif symptoms get more severe to contact them ASAP. Happy to chat more if need be.

[netie54 in reply to Junehope]

Hi June. Thanks for you swift reply. My cardiologist never seems to share the measurement of mine with me. I had an echo on Sunday (privately) because I want to keep an eye on its progression . All they say is that it is still moderate and not ready yet to have to the op. If I had a spare £50,000 floating about I would have it done now privately and get it over with . I’m 69 with no symptoms but I feel like it’s a time bomb waiting to go off. Regards Annette

[Junehope in reply to netie54]

Hi, after my check up a letter is always sent to my gp about my condition and I get a copy through the post so I would ask your consultant or the specialist cardio nurse whether a letter was sent to your doc and whether you can have a copy.... regarding time scales, I was told 7 yrs ago that they thought they would need to replace mine within 2 years but it hasn't been done yet. They ve had to deal with other heart issues but not the valve yet... Good luck. I know what you are saying about a ticking time bomb,.I feel exactly the same, but as time has gone on I ve just tried to get on with things... these things progress at different rates for each person and I think I was moderate for about 10 yrs and then been severe for 7......

[netie54 in reply to Junehope]

thank you June. I’ve had a good to myself and decided to to worry about it any more and just try to enjoy life as it is now. X

[Cat04 in reply to netie54]

Ask for a copy if your echo results, it will give the relevant measurements. I may be wrong, but I don't think you can have surgery at the moderate stage as the risk of surgery outweighs the risk of waiting.

[netie54 in reply to Cat04]

Yes that’s how I understand it to be. I’ve asked for a copy of my echo that I had on Sunday when my cardiologist writes to me with the results.

[Yumz199725]

Hi netie54. Mine was mild to moderate for about 9 years or so then when I was 22 went to moderate to severe can be a slow progression or quick depending on the individual. I have bicuspid aortic valve mine is both narrow and leaky so I get yearly check ups my next one is January 16th 2024. I have been told will need the valve replaced eventually but at the moment I'm stable which is very reassuring. Have you got any symptoms with the mild stenosis? Sometimes even with symptoms and mild to moderate can become a priority to do an operation have you spoken to your cardiologist about how you been feeling. I agree it's not a nice feeling knowing that it will get worse and worse even when they tell you your stable doesn't stop you from worrying yourself sick.

Take care ❤️

[netie54 in reply to Yumz199725]

hello Yumz. Thank you for you reply. I’ve give myself a good talking to today and decided that I am not going to worry about it any more. It’s ruining my quality of life keep worrying so I’m going to change my outlook and enjoy life while I can. I have absolutely no symptoms and I will post the results of my echo I had last Sunday.