I was recently diagnosed with a bicuspid valve and I’m 47. This was diagnosed from an electrocardiogram following an ECG that showed up an irregularity. Since then I have had a 24 hour blood pressure and ECG test which have not shown up anything of concern.
My cardiologist says I need 6 monthly reviews as my condition is moderate. I had the test privately as the state hospital has not come through. Should I have had an MRI, x Ray or any other tests? I have a friend with the same condition and she said her ecg results were fine even though her heart was failing and the severity only became evident after an MRI scan.
Looking to hear from other people with a bicuspid valve. Can you live normally for a long time looking after yourself with a moderate condition or is recommended to have surgery before it gets worse?
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Andywags
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I too was a bicuspid valve sufferer, apparently it's a lot more common than people realise. Ordinarily these things are not found about until people are in their sixties and start suffering from breathlessness or angina. I only found mine as I cycled a lot (49 years old at the time) and started feeling bad. I had an Echocardiogram to verify the severity (similar to what pregnant ladies have). I was severe and so was scheduled for surgery about 6 months later. From what I understand, it is a very manageable condition as long as it not severe.
Go with what the specialists say and they will keep an eye on it. OHS is not something to be taken lightly.
Hi Andywags,I had a aortic valve replacement in January this year. My valve was bicuspid as well and I was asymptomatic until March last year (56yrs old)
Until then I did everything normal with no affects noticeable. I was told to carry on as normal until I had symptoms which I did. As long as your being monitored you should be fine. Jon.
I reached 70 and i was more active than most. I didnt even know that i was bicuspid. Then i became unwell, being exhausted to an extreme degree. The diagnosis was stenosis. I had the op to replace the valve, May 2020. The stenosis had become severe .
So please note, a bicuspid valve doesn't need any treatment. Maybe it will cause problems, often stenosis, so no way should you have early treatment. A new valve is unlikely to be trouble free indefinitely.
Also, the scientific advances are huge right now. If you can delay by years the replacement op will be more efficient.
I found out I had a bicuspid valve the hard way by suffering a cardiac arrest, I was 49 at the time. It was just after completing a 5k and I was really pushing it at the end! It turned out I also had stenosis due to the valve and had surgery a week later. That was 2 years ago and I'm back running 5k's.Looking back there had been some signs but only mild and I thought I had asthma which the doctors went with, all my siblings have asthma to some degree so that seemed reasonable.
It was an echocardiogram that I had that picked up the bicuspid bit followed by an angiogram for the stenosis.
Don't rush for the surgery but don't push too hard when exercising. From what was said at the time I am an unusual case with things not being diagnosed and then causing a problem.
I am 56 and was diagnosed with a bicuspid valve as a child. It has never caused me any trouble and it was only after age 40 that I started 5 yearly echo cardio gram s to check it. These then went to every 2 years. It was at the last one that they noticed aortic swelling. I had MRI scans and it was stable fir a couple of years but had moved last year. As there was a greater risk of aortic rupture ( and almost certain death) I was recommended surgery to replace the aorta and the valve which was still working ok. I’m through the surgery and signed off. It was tough but not as bad as I thought. I’m glad I had it done before getting unwell. All I can say is keep getting it checked
I too have a bicuspid valve and enlarged aorta which is common with a bicuspid valve. I only found out in 2018 even though I was checked 20 years earlier and was never checked again or informed. I'm on the watch and wait like you and have found the best advice from the lovely people on here. It was scary when I found out but I've learned to just except and not to stress.
Hey Andywags, welcome to a club you never wanted to be part of! A diagnosis like this is always a massive shock, so I imagine your head is all over the place. Clearly, it's not as good as not having
You may not think so at the moment but there's actually only good news here.
Thanks at least I know now and will keep it checked. Yeah it’s comforting to know there are more people out there and coping well with it but wish we were all just fine though! Finding out lots and so grateful for the information on the BHF website.
Hey Andywags. Sorry pressed send too early! This may make more sense this time. Welcome to a club you never wanted to join! This sort of diagnosis is always a shock and I imagine your head is all over the place at the moment. However, while it may not feel like it, and it's not as good as not having moderate stenosis, there's actually mostly good news here. Why? Because, first, you're now on the radar for a condition that because it's asymptomatic can often leave people who don't get picked up in A&E, so while regular checks are a pain and it's all scary, it's actually positive. Second, moderate obviously is worse than mild but you can stay moderate for years (though you may not). I was diagnosed in my teens and went very slowly from mild to moderate to severe until I needed an AVR at age 50. So it's not a given things will accelerate and, if they do, well it's that on the radar point again. For me, I never felt I had any symptoms as such, but the difference after the operation was staggering, so they'd just crept up over years. As for the op itself, yes the build-up was terrifying but the actual op itself was, for me at least, very straightforward and I'm now much fitter (if still a creaky fiftysomething) than I was before. I went from twice yearly to yearly to six monthly checks btw. Echos, MRIs, exercise tests and 24 hour BP monitors - so I can't fault the NHS' commitment and dedication. So basically what I'm saying is it ain't over yet, even if right now it feels that way! But do use us hearties for advice and support as many of us have been where you are right now and that's what we're here for! Good luck and take care. Nic x
Thanks for getting back again with your experience. I think being in Spain has made it hard for me as I miss the UK loads. I went to the doctors about headaches and the nurse did an ecg which showed up my heart might be enlarged. Spain has good health care too but I am still waiting for a hospital appointment as they are only dealing with urgent cases. So I joined Bupa Sanitas through work and saw a cardiologist. I thought it would be a routine...yeah you’re fine so I was shocked when the echocardiogram showed up this. Since then I have had 24 hour ecg and BP tests and all was ok so the advice was check in again in 6 months for another ecg and blood test. Getting all this in Spanish was a lot to take in as I struggle speaking Spanish but I surprised myself how well I understood everything he told me. I’ve not had any mri or exercise tests yet.
Keep us posted how you're doing Andy in that case, as that all sounds rather stressful! And feel free to DM too. Obviously none of us are doctors, but if we can help, signpost or offer reassurance, we will. Oh yes, for any more medical questions the BHF does have nurses who can sometimes help? Just if you're struggling to navigate this weird and unsettling new world you're in. Take care. Nic x
Hi yes I discovered I had a Bicuspid Aortic Valve when I went in for minor surgery after having my daughter aged 32 years. Cardiologist was lovely but had to call in a Colleague from The Royal Brompton and she told us both 'it was just my asthma'! Luckily we got past her and had my first Aortic Valve replacement a few months later. Hope you find the answers you need
Hi, I hope you are doing well. I have recently been diagnosed with a leaking bicuspid aortic valve. I have been told I will need surgery. I am currently looking at options and have only heard good things about the Royal Brompton.
Do you mind me asking what your experience was like and how you were looked after? I am going to discuss with my consultant whether I am eligible for Minimally Invasive Surgery or whether Open heart surgery is the best.
Many thanks for your time and my best wishes to you.
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