BAV and aortic aneurysm

[Jlw3027]

My BAV was diagnosed in 2018 and obviously was a little worried as I do get breathless easily. However my cardiologist didn’t seem bothered and wanted to see me every 3-4 years I wasn’t happy with that and asked to be seen yearly however had to agree to 2 years as that’s all they would allow. I’m currently in 10mg ramipril for HP. Below is what was said in my last report.

My question is should I been seen more regularly? And what is the value registry ? Does this mean I’ll not be seen at my usual hospital? Also anyone else with a BAV what size was your aneurysm before surgery?

“undergone a transthoracic echocardiogram. I am very pleased to report that this has shown mild thickening of the bicuspid aortic valve with trace aortic regurgitation, the LV function is entirely normal, flow velocities are normal across the valve, although there is some turbulence in the LVOT. The aortic root measures 3.5 cm at the sinus level, and 4.1 in the proximal ascending aorta.

I will transfer her care over to the valve registry for ongoing periodic surveillance”

Any feedback would be great thanks 😊

[Lexi72]

Hi the frequency of monitoring will vary depending on how far advanced your condition is. BAV is very common 1-2 per cent population and have read that many people have it all their life and need no treatment. It is often associated with dilated aortic root and ascending aorta . You don’t want to let the aortic root or ascending aorta get too big because of risk of dissection so they try to operate before it reaches that stage. Usually cardiologists adopt watchful waiting increasing monitoring as it gets more serious so I started at 1 year and then was reduced to 6 months. A 3oml aorta is normal would only consider operating usually at 50 for ascending aorta unless you have inherited condition like Nathan’s where they may consider opera earlier Other grounds for operating are leaky valve or aortic stenosis . So if regurgitation gets severe or you end up with severe stenosis will operate even if aorta is still ok. So in my case the aortic root at 4.5/ 4.6 has been stable for7 years but am waiting for my OHS to replace the valve due to severe regurgitation and they may do the root as well to avoid a second operation. So suspect that the frequency of your check ups is due to the fact they do not regard the condition as very advanced yet and they will increase it if it gets worse. The key with the diagnosis. Is not to let it take over your life and enjoy life to the full. They have identified that you have a BAv and are monitoring it. it may be many many years if at all before you need something done. If you are really worried about the frequency of monitoring you could get a private echo and check up every year or so best wishes Lexi

[Jlw3027 in reply to Lexi72]

Thanks for your reply, I’m just concerned as my grandfather died due to valve disease (however this was many many years ago) and my dad had it. My dad went from diagnosis to severe within 9 months and was told he was to ill for the surgery, they did the surgery in the end but only because we got pals involved, he’s not the same very weak and still has issues now. I know it’s not necessarily going to happen to me like that but it’s always at the back of my mind. All the best to you too x

[Lexi72 in reply to Jlw3027]

Really sorry about your grandfather but glad your dad’s operation was successful.Did you tell the cardiologist about your grandfather and dad as if there is a family history of valve issues this is a risk factor they do have regard to when considering treatment plans. I was asked about family history several times. My cardiologist also has now tested me for marfans although I don’t think I have it Take care the diagnosis can be really hard to cope with. Completely poleaxed when first diagnosed . Take care Lexi

[Jlw3027 in reply to Lexi72]

Yes that’s the reason I got checked in the first place, but again they didn’t seem to bothered but that’s the reason I asked for yearly monitoring but they still said no. Thanks for taking the time to reply. All the best x

[Jlw3027 in reply to Lexi72]

Can I ask about dental work as you also have BAV. Do you take antibiotics before procedures? Ive been told I don’t need to by my dentist, and I’ve not had a face to face with my cardiologist for about 3 years so haven’t asked. Thanks again x

[Lexi72 in reply to Jlw3027]

Hi Jlw3027 I have never been worried about taking antibiotics before seeing the dentist but have always seen the dentist regularly. I think that the BHF website says that it is important to keep your teeth in good shape. There is a link between heart health and tooth and gum healthIt is very important to make sure your teeth are in a good state pre operation as there is an increased risk of valve infection after the valve is replaced . The pre operation tests in my case include checking that you have seen the dentist in the last 4 months and have anything that needs sorting fixed, I wonder if you should talk to the BHF nurse helpline who will be more knowledgeable about this sort of issue the contact details are on their website I called them when I was first diagnosed seven years ago and I found them very helpful and reassuring on my condition generally. It can just be great to talk to someone. There are loads of questions you never think of at the time you are diagnosed only afterwards best wishes Lexi

[Jlw3027 in reply to Lexi72]

Thank you so much I never knew I could contact them with these questions x

[Sonny657 in reply to Jlw3027]

Hi Jlw3027 👋If there is history in your family then stress this to your cardiologist and request to be seen more frequently. My mum died of a ruptured ascending aorta 5 years ago at the age of 76. It was diagnosed when she was 71 and she had a graft fitted to replace her ascending aorta and part of her aortic arch. She also had a new aortic valve fitted. Unfortunately after 5 years her ascending aorta outgrew the graft and she passed away. Last month they found on CT that my ascending aorta was at 3.7cm which is the high end of normal, but nevertheless a cause for concern. I am waiting to see cardiologists and to have a genetic blood test done to see if I've inherited anything from my mum. My advice is to push the cardiologist directly or through your GP. Stress your concerns over your family history and tell them it's even affecting your mental health. I went to A&E no less than NINE times with chest and back pains after the initial diagnosis before I was given a full cardiac MOT at a local specialist cardiac hospital. Luckily tests showed that I have a normal trileaflet aortic valve and that my chambers and coronary arteries have minimal plaque so now it's a case of no smoking or drinking whatsoever, watching what I eat, keeping my weight, cholesterol and blood pressure down and taking the odd walk here and there for exercise. If you take good care of yourself it can't hurt and at least you can say you tried to help yourself. But I can't stress enough about speaking to your cardiologist and GP.

I wish you the best of luck 🤞🏻 🤞🏻

[Jlw3027 in reply to Sonny657]

Sorry to hear about your mum. They are aware as thats the reason I asked for tests but I got the feeling that they think I’m worrying too much! And now they are saying they will put me on the valve register for surveillance (I can’t find anything on the Internet about it) and I’ve not heard anything since and that was in May. Thanks again for your reply x