Bicuspid Valve diagnosis

[Guest]

Hi all,

ive recently been diagnosed with a bicuspid valve with slight enlargement.
I am 42 and and whilst carrying my first child I was told I had a heart murmur and sent off for a echo. All I was told was that I needed antibiotics during labour. I was 22 at that time. I received antibiotics and told nothing else and was never followed up. I had my second child at 28 Andy mentioned to my obestrician that I had a murmur with my first pregnant year and nothing was done so I assumed all was ok. I had another child at 39 “ I know a massive gap” I didn’t plan for anymore and again mentioned the murmur and yet again nothing was done. In June I started getting mild chest pain whilst chasing my little one round the garden and a few times when rushing around so I went to the doctor and they fast tracked referred me for angina as it was in my family. When I got to the clinic I explained my symptoms and also to.d them of my past murmur so they sent me for a echo and a CT angiogram to check for angina. I had the echo first then CT. I had a follow up appointment and they told me my arteries were clear no sign of angina and that I had a buscupsid valve with slight enlargement that’s all I was told. The nurse explained the importance of dental care and that I get my siblings Andy children’s scanned. Because I had a few episodes of mild heart ached waking me up at night they hadn’t sent me for an MRI which I had last week which I’m still waiting for my results. I had the mri because all they were checking on the CT was for the angina nothing else.

On my last visit to the cardiologist they said my chest pain was not due to the valve as there was only slight narrowing but I believe it is as I would not have gone to the doctors in the first place.

i did ask if I would need surgery in the future and they have said yes I do Andy booked me in for an echo in 2 years so I’m assuming it’s not that bad yet?

i have an underative thyroid hashimotos which doesn’t help as when I do go overactive due to swing of over / under active very now and the. Which speeds up my heart.

please can you give any advice as the waiting is hard and don’t really have much time on my appointment due to there massive clinics. I had to wait 2 hours last time and don’t want to hold them up too much as I understand that the NHS is under severe pressure.

What should I ask on my next appointment?

thanks for any advive

Al

 

[Paleowoman]

Hi Al - I was told I had a heart murmur when I was 25, and a cardiologist I saw said he thought this was due to bicuspid aortic valve but when I had an echo it wasn't clear (this was some years ago !). I had another check when I was 35 and pregnant but still nothing was done. It wasn't until I was 53 and seeing a gastroenterologist that he heard the murmur and said I should see a cardilogist again. Cardio saw it was bicuspid aortic valve and said I'd need surgery one day as the stenosis across the valve was mild to moderate. I was followed annually with echocardiograms. When I was 60 I had surgery - probably too soon imho as I was complately aymptomatic and extremely fit.

You should make sure you get your two yearly echos and when you see a cardiologist for the results each time ask for the pressure gradients across the valve and if there is any regurgitation or any other problems. If the stenosis gets worse or if you get regurgitation they will monitor you more frequently, ie annually and then six monthly - the NHS will do that.

Make sure your GP knows you have a bicuspid aortic valve too and that it's on your medical notes as a "current problem" - my heart murmur and early appointments with cardiologists were not noted on my medical records which I'm astonished at !

 

[epstns]

I'll agree with Anne (Paleowoman) about not missing your scheduled evaluations, echo, etc. That way they can keep track of any changes in your condition. Sometimes bicuspid valves remain stable for a long time, but as we say here, "The worse they get, the faster they get worse." If you can get not only your pressure gradient, but also the calculated valve area of your aortic valve (the bicuspid one), that will help you to track progression.

The other thing I would advise you to pressure them on is why you have the angina (chest pain). In the last 5-10 years the medical profession has realized that women do not present with the same sort of pains and symptoms in heart disease. That you have pain is real. They should not just push you off without a good explanation of the cause of the pain, and what should be done to manage the condition. There are other causes of chest pain beside blocked arteries. Some of these are serious, others not. You can't take good care of yourself unless you know the "why."

 

[Alisbaba]

Thank you both for your advice and I will defiantly be armed with questions when I get my results from my MRI, as I said above about the slight enlargement is this an aneurysm as I read somewhere that’s doctors only refer to enlargement not to scare patients?

I was logged in as guest last time and have now signed up


cheers

Ali

 

[Paleowoman]

as I said above about the slight enlargement, is this an aneurysm as I read somewhere that’s doctors only refer to enlargement not to scare patients?Ali

Hi Ali - Glad you are now signed up ! When you say "slight enlargement" are they referring to your aorta or to your heart ? If it's your aorta then you can ask for the exact measurement, the MRI will give that. If it's your heart that's "slightly enlarged" that is not given a specific number. Hope you don't have to wait too long for the follow up appointment, the waiting is always stressful. Wrtie down your questions.

 

[Alisbaba]

Hi Paleo,


it the Aorta that is enlarged.

Thank you

Ali

 

[Alisbaba]

Hi all,

i had had my results and then doctor has just put
“ the MRI results are reassuring and you main aorta is only slightly enlarged, we will review in 2020 Andy you will require regular scanning”

I Have rang his ecstasy as I want a copy of the scan results to find the diameter of the Aorta.

Ali

 

[Alisbaba]

Hi all,

i had had my results and then doctor has just put
“ the MRI results are reassuring and you main aorta is only slightly enlarged, we will review in 2020 and you will require regular scanning”

I Have rang his secatary as I want a copy of the scan results to find the diameter of the Aorta.

Ali

 

[pellicle]

I Have rang his ecstasy

MDMA (Medical Doctors Matronly Assistant) or the other one

?

 

[Alisbaba]

Sorry pellicle should of said secatary