Cardiologist found a heart murmur, I'm terrified.

Heart health and blood vessels
1

Hi everyone,

I'll try and cut a long story short here. Only, I am really scared at the moment, and after doing quite a bit of research over the last week, I am convinced I am suffering from aortic regurgitation. 

So, all my life (I'm 25, 26 in June) I have had a strange relationship with my heartbeat. I hate the feel of it. I remember when I was around 10/11, being obsessed with thinking that I could make my heart skip a beat through my breathing. Only it used to scare me as I thought that as I breathed in and my heart delayed its beat, it actually wouldn't beat again. I became really conscious of my breathing and I've always felt I've had to consciously breath a lot more than normal. This has stayed with me all my life. 

Plainly, over the years its made me really anxious, particularly when exercising. The thing is, I have always been able to feel my heartbeat. I'm quite a skinny guy with a small frame and assumed this is relatively normal. As I've gotten older, however, I realise that it perhaps is not entirely normal. I can see my pulse in my left rib, as well as in my neck. Sometimes I can see it very faintly in my right wrist. 

A few years ago I started getting strange beats. Not racing or anything, but the beats themselves felt 'floppy' and spasm like. It would happen randomly seemingly with no correlation to anything I'd been doing. 

Lately these beats had gotten worse so I went to a doctor. He suggested they were harmless but said for piece of mind he would refer me to a consultant cardiologist for a chat. So last week I went to my local hospital and had a chat with a consultant cardiologist. They ran an ECG on me, which apparently all looked fine, and after describing the beats, she basically told me not to worry. I also described the power of my pulse unnerves me and I asked if it was normal. Again, she said it was fine. 

Then before I went, she had a listen to my chest through a stethoscope. She was very thorough. All sorts of positions and had my leaning forward and holding my breathe etc. She prodded my stomach a few times (not sure why?) and checked my legs for swelling (I understand to check for edema?). 

After she said she could hear a small murmur. However, she stressed to me more than once that, to her, it sounded innocent and I really should not worry at all. However, then she started writing out a referral to have an echo scan! Next, she is talking about how valves in your heart can leak...

My understanding is that heart valve leakage (regurgitation) is not something I shouldn't worry about. 

How could she actually tell if the murmur was innocent just by hearing it? Can she do that, really?

Since, I've done some research and I'm convinced I have aortic regurgitation. 

1. I have a pounding pulse. I can visible see my head slightly bobbing with each heartbeat. I can see my heartbeat in my left rib and in my neck. I also have a collapsing pulse when I raise my arm above my head. 

2. There is obviously a murmur and she was talking about leakage.. her attitude to me seem to change completely after she examined me. 

3. I've noticed myself getting out a breath a bit more easy in short and intense spurts of exercise. 

4. Lying on my left side at night is becoming unbearable. 

Usually in a morning on waking up my heart rate is usually mid 40s (when I'm not stressed etc). I'm in decent shape. Sitting here typing this, I am a little anxious, but not overly and my heart rate is at 62. 

This morning the pounding, not racing, of my heart was driving me crazy. Against how I felt, I decided to go for a walk. I walked at a brisk pace for around 4 miles. When I was out walking I noticed the pounding had died down a lot and could barely feel my heart in my chest just standing still. The pulse was quicker, but I could barely feel it. This seems weird to me? I did read that aortic regurgitation accommodates a higher pulse rates well as there is less time for regurgitation?

Was my cardiologist just trying to not scare me or should I really be worried? I've done nothing but research this constantly now for over a week. 

Thanks in advance.

Paul 

2

Stop worrying everyone can see the pulse on their wrist beating and stop Googling. You have pulses all over your body and in your stomach. Murmurs are very common. I'm 83 and have known of mine since I had my army medical when I was 18. 

3

Can they though? Does everyone see their pulse in their neck?

It's hard not to Google things, unfortunately. 

The cardiologist said it sounded innocent to her. She stressed not to worry. But how can she possibly tell? Can she? I don't know..

All I know is I've had this horrible bounding pulse all my life. 

4

Hi Paul, having gone through 2 open heart surgeries myself in my late 20s. I would say that the more you think about it the more you are going to notice it.

This is easier said than done but you need to try to put it to the back of your mind. You cannot do anything until you've had the tests (which unfortunately does take time).

If there is something wrong they will look to get it sorted out (if they believed it could cause a major issue they would investigate it further immediately!)

Matt

5

You will feel your pulse and your heart pounding but I very much doubt if you would feel or be aware of a murmur unlike ectopic beats or AF. When I have an echocardiogram to check my heart valve I know when I hear my mitral valve murmuring  as opposed to my aortic one.

Many sportsmen have murmurs, ectopics and AF. One player recently had an ablation and was soon playing again. 

6

Thanks Matt.

What surgeries did you have?

Just incredibly worried about the prospect of surgery. My biggest battle of the last 6/7 years has been depression and this is the last thing I need. I honestly don’t know if I have the energy to get through it. 

It just worries me that I have always been able to feel my heart beat in my chest. Even at rest and lying down. I always thought it was normal but apparently it is isn’t. As I said, my pulse has always been huge. I can see it in my chest and my neck.

She really stressed the murmur sounded innocent but I guess we won’t know until the echo. 

I know I’ve sort of self diagnosed everything but everything is adding up towards what I’m fearing.

7

No one will ever convince you that a slight murmur doesn't  lead to surgery until you have had the echo. Speak to the person doing it otherwise any sound you hear will be fatal. It can take a while to get the results back otherwise. 

What makes you think that you can tell it is your aortic valve as opposed to the usually more likely mitral valve?

8

Hi Paul,

I had an ASD repair (4 hours in sugery) and a Sinus of valsalva aneurysm (16.5 hours). I knew nothing about the first murmur until a pre op exam (for something else) found it.

If there is something wrong they will find it and if you've had it all your life then you do not need to worry about it as much as you are. If you start passing out or have no energy to walk only a few steps then you should worry.

I know that is easier said than done, though I think you might be working yourself up so much that it feels worse than it probably is.

Matt

9

Medical students and young doctors always like to hear my murmur as part of their training.

A new patient aged about 50 at my GP's went to see him with a chest infection and he asked her how long she had aortic stenosis. She evidently had been born with a faulty valve and had not know and had been a dancer in West End musicals without any problem. 

10

I'm convinced it's the aortic for a couple of reasons. Firstly, I had the wide pulse. I have the majority of the signs. I can see my pulse in my neck, I can see it in my wrist, my left rib, my fingernails, even in my pupils. Also, my foot bobs up and down when I sit and cross my leg over. These are all the clinical signs of aortic regurgitation. 

Secondly, the cardiologist, when listening to my chest, had me bent over forward and holding my breath. As I understand it, this is how they specifically listen for AR. 

11

Thanks for your reply again, Matt.

Perhaps I am worrying but all the signs do indicate aortic regurgitation. I'm basing it off my own research from my signs and symptoms and obviously the murmur. 

One thing that makes me think is that she said my ECG reading all looked completely normal (I've actually had 2 in my life). If I had AR, surely enlargement would show on an ECG? I don't know...

I've had a chat with a couple of people who have had their aortic valve replaced due to regurg. Both have said they had the bounding pulse like mine. 

She did stress it sounded innocent, as I say. I got tested for hyperthyroidism a few years ago.. but never found out my results. Apparently that can cause a bounding pulse. In the UK, if you don't hear back from your doctor about your test results you just assume everything is okay.. and no doctor has ever mentioned it to me since.

Scared and confused to be honest. 

12

Hi Paul, I sympathise totally. 7 years ago I had knee surgery and contracted MSSA in my blood which hospitalised me for 17 days and nearly killed me (if I had not gone when I did I would have gone into heart failure ) they give me an echocardiogram and discovered I had infective endocarditis. My mitral valve regurgitates blood and I have had no problems until now.

I went for my yearly heart scan and things have gone a little downhill and I really did not expect it. The chamber the blood is backing up into has got larger so they are putting me on the treadmill wired up to see how much pressure it is under excersise. I have always been active but I have felt very tired and drained and I put one and a half stone on. I’ve also had a dull ache down my left arm. 

If you have got a valve that regergitates you will be checked regular as a small regurgitation has no symptoms. You just need to be aware of how you are feeling and any changes that you may have.

I have done a lot of research on my valve and it scares you but I believe you should be prepared. If it helps I’m scared as mine is deteriorating and the thought of open heart surgery is so daunting. My husband tells me not to think about it but in reality I can’t stop myself. Talk to people tell them your worries and get as much support you need. I hope it’s good news for you but if it’s not it can be fixed 

13

I have never heard of a pulse in finger nails  or pupils.

No point in speculation until you have the echo 

14

Thanks for your reply Jacqui.

Are you in the UK?

Also, how tired do you feel? Does walking up stairs knock the wind out of you or just out of breath a little?

To be honest, I've never taken much notice of being out of breath. But now I notice it more and more and I keep thinking back to time when I got more out of breath doing things. 

It's bounding pulse that is a giveaway really. My pulse shakes my entire body and it is there all the time. I know it's not normal and I know it has to be linked to aortic regurgitation. I'm only 25 and I just feel so hopeless about it all. I suffer with depression as it is and I just can't deal with this. I know I wouldn't have the strength to get through it. 

15

I've had a very powerful pulse since 2010 and I have mild valve and aortic regurgitation and my eyes definitely pulse with my heartbeat especially when I'm looking at busy lined patterns in the floor a wall or maybe a line patterned picture or shower curtain.

16

The eyes may be a different problem. Have you seen an optician about it? Are you on any medications with possible side effects that could account for some of it.

17

Hi, thanks for your comment.

Can I ask you, is your pulse more or less noticeable at night? What about exercise? 

Did you have an ECG? Did your doctor say any signs showed up on that?

Thanks