Known Murmur for 20+ Years, New Diagnosis

[Cacaco]

Hey folks! A doctor first mentioned the sound of a heart murmur to me when I was about 20 years old. I had an EKG at that time, and it was fine.

Fast forward about 25 years. I had noticed an occasional flutter in the past year or two but really hadn't thought about the murmur at all. No doctor really showed an interest in all these years, so why worry? Then my dad, who also had a murmur, is diagnosed with severe aortic stenosis and had valve replacement (which didn't go well due to a variety of complications).

I decided to get my murmur checked out and was diagnosed with mild aortic stenosis. The report doesn't mention aortic regurgitation but does mention mild or trace tricuspid and mitral valve regurgitation. The AV leaflets are thickened and fusion of 2 cusps can't be ruled out per the report.

What I am wondering is what the sound of the murmur was 20 years ago if everything is still "mild" now? Also, anyone know what the deal is with the regurgitation of the other valves? Could that be related to the aortic valve stenosis?

I didn't have the report when I met with the cardiologist and would have been too stunned to ask much anyway. Any info is helpful!

Carla

 

[Paleowoman]

Hi Carla,

When I was 25 a doctor told me I had a heart murmur. He was very surprised that I didn't know I had it as it was very clear. I had a lot of tests, cardiologist thought it was bicuspid aortic valve and I had an echocardiogram but, 35 years ago echos were not as good as today's and they couldn't verify whether or not it was a BAV. No one told me to do follow ups and there was never an occasion for anyone to listen to my chest. Then 28 years later, seven and a half years ago, a gastroenterologist who I was consulting for a gastro problem listened to my chest as he heard a 'sound' radiating along an artery. He said I should definitley see a cardiologist. I saw one and bicuspid aortic valve was then seen clearly on the more modern echocardiogram. The stensosis at that point was described as "mild" and the cardiologist said I would have to have the valve replaced at some point for sure. He recommended yearly echocardiograms from that point on. Seven years later the stenosis was severe and the valve area size getting very small and the valve was replaced last January - I had absolutley no symptoms prior to surgery and was feeling fit and well !

It would seem that murmurs can be "mild" for years and years. I was told that my bicuspid valve would have been calcified to a certain extent back when I was 25 which was why they could hear it so clearly then, but that the stenosis didn't advance very fast then. However, as we get older they can obviously advance quickly from 'mild' to 'moderate' to 'severe'.

The trace regurgitation on the other valves is something that seems 'normal' from what I've seen on reports and discussions here. It's something to check with the cardiologist when you next see him/her. Are you going to be having repeat echocardiograms ?

 

[DebbyA]

I agree that it is imaging that has improved. I was told I had a murmur when I was 12. I'm not sure whether they even identified which valve. In my 30's I saw a cardiologist for insurance clearance and then sported a diagnosis of mitral valve prolapse for about 10 years.

Be sure to get rechecked as often as your doctors recommend, and try not to worry about it. Some people never have to get their valves replaced, and those of us who do, usually recover and go on with our lives. The surgery scene for valve replacement is improving all the time, so if you start worrying now, it will probably be about the wrong things!

"Trace" is a non-issue. I read once that if every heart was examined, all would have a trace something.

 

[river-wear]

Hi Carla,

Something like 20-30% of bicuspid valves eventually require surgery, so you might be in the lucky 70-80%. Go for your follow-up visits and try not to worry unnecessarily in the meantime. Your murmur might have sounded the same all of these years. The EKG you had when you were 20 would have been of limited value to characterize the level of stenosis.

Good luck.

 

[Cacaco]

I appreciate the responses. I was really quite freaked out by the prospect at first. I haven't calmed down enough to take up running, which I really didn't want to do anyway.

It just seems weird that the murmur could be there that long. Anyone know what exactly the sound of the murmur is generally? Is it just the blood not moving right through the valve?

 

[pellicle]

Hi

I was really quite freaked out by the prospect at first. I haven't calmed down enough to take up running, which I really didn't want to do anyway.

well I'll no doubt cop flack from the runners for this, but I'm in your boat, I hate running. I do cycling or cross country sking (geographical location and season permitting). Running is just boring and wears out your joints faster. If you hate it, try something else.

If you don't like cycling (and you don't really need a fancy bike btw) then what about rowing? Nice social stuff goes along with that too....

Anyone know what exactly the sound of the murmur is generally? Is it just the blood not moving right through the valve?

its the fact that when the valve is supposed to close (the "lub" in "lub lub") it doesn't and when the muscles squeeze it gives a 'sush' back the other way. Half fill a plastic bag and tie one end, squeeze water up and down it (not bursting it) and you'll feel that squelsch instead of the parachute flaps (the native valves) closing with some softened snap.

Doppler sounds on your echo scans are interesting, eventually one can get to hear ones-self when things are not what they "should be" and you're in closer need of surgery.

Its just a bio-mechanical machine (all of our bodies) and so don't get too anxious about it. Parts sometimes need replacing while still in the warranty period ;-)

 

[MrsBray]

12 years ago "You have a severe murmur!" --nurse practitioner at DOT physical
11 years ago "You have mild aortic stenosis. You'll probably need surgery when you're 60 or 70." --Cardiologist after echo & stress test.
6 years ago "I don't hear anything. Are you sure you have a murmur?" --different nurse practitioner
1.5 years ago "You have severe stenosis & need surgery NOW." --different cardiologist
.5 years ago "Now's a good time for surgery" --surgeon

I've found that my own hearing of my current valve depends on so many factors - how full my stomach is, how I'm holding my upper body, which way my head is tilted, what else is going on. Different doctors hear different things. Good Lord willing 'n the creek don't rise, I'm not going to change cardiologists any time soon.

After 11 years of wondering what it would be like to have surgery, I don't have to wonder any more.

 

[Agian]

12 years ago "You have a severe murmur!" --nurse practitioner at DOT physical
11 years ago "You have mild aortic stenosis. You'll probably need surgery when you're 60 or 70." --Cardiologist after echo & stress test.
6 years ago "I don't hear anything. Are you sure you have a murmur?" --different nurse practitioner
1.5 years ago "You have severe stenosis & need surgery NOW." --different cardiologist
.5 years ago "Now's a good time for surgery" --surgeon

I've found that my own hearing of my current valve depends on so many factors - how full my stomach is, how I'm holding my upper body, which way my head is tilted, what else is going on. Different doctors hear different things. Good Lord willing 'n the creek don't rise, I'm not going to change cardiologists any time soon.

After 11 years of wondering what it would be like to have surgery, I don't have to wonder any more.

How were those twelve years in relation to anxiety? Did you worry? How does the other side compare?
Sorry to bombard you with questions, but I've had estimates of between 2 and 20 years before I need surgery.

 

[river-wear]

Agian, my mom was told I had a murmur when I was four years old. A few years later, the cardiologist thought I'd need surgery as a teenager. Turns out he was off by, oh, thirty years... (Later cardiologists never ventured a guess.) They really don't know how long your heart will compensate.

 

[Paleowoman]

I appreciate the responses. I was really quite freaked out by the prospect at first. I haven't calmed down enough to take up running, which I really didn't want to do anyway.

I've never done running. I do weight lifting (heavy weight lifting that is). I only cut down the weight on referral for surgery which was three months before ! Prior to that I was lifitng heavier and heavier. I was still lifting quite heavy weights two days before surgery as I felt fit enough.

Anxiety can make doing exercise more difficult. It might be an idea for you to see your GP to discuss the heart murmur issue. Exercise is the best thing for your heart - except when it's having severe problems - and being anxious is not good anyway. Sounds like you haven't got enough information from the cardiologist.

 

[DebbyA]

Carla,
Where did you get the idea you'd have to take up running? Some regular exercise and modest strength training are good for everyone, but if you do have to have surgery, being fit--not necessarily athletic if that's not your mode--will be a big benefit to recovery.

I found this link to heart sounds with a quick Google searchhttp://depts.washington.edu/physdx/audio/lateas.mp3.

Always get your echo report as soon as you can and save them. My first cardiologist was very good about giving me one during the followup, but I've had to ask for them everywhere else. Also ask the cardiologist which of the items he/she pays most attention to for your situation, and what they mean. If you can get the echo tech to talk, it's a real fund of information, but most of them act like the floor will open up and swallow them if they tell you anything.

 

[MrsBray]

How were those twelve years in relation to anxiety? Did you worry? How does the other side compare?
Sorry to bombard you with questions, but I've had estimates of between 2 and 20 years before I need surgery.

The first time I heard 'heart surgery' I *FREAKED OUT.* I was a mess for about a week, and worried for 3 months until I could get to a cardiologist and get the real information. I went from mild to moderate about 7 years ago, and moderate to severe about 2 years ago. I never really thought about surgery until last January, when the crappy cardiologist sent me for a heart cath without telling me why.

So I guess it was always in the back of my brain, but it didn't really cause any anxiety or change in lifestyle until about 2 years ago. My numbers were getting lower at each echo, and it was tough to accept the fact that there was NOTHING I could do to slow or stop the change from happening.

The other side is great! I have more energy than I know what to do with. I can lift my kayak again. I don't need a nap every afternoon. I don't pass out at the bottom of the first drop on my favorite roller coaster! My memory is better. I sleep better. But the BEST part truly is not having to worry about surgery anymore.

None of my doctors would ever commit to a time frame for valve replacement, until it was time and my surgeon said, "Let's do this now."

Hindsight is 20/20, right? I wish I had kept a logbook of things that made me sleepy or tired or out of breath, like how many times I could walk around the block at a certain pace before I couldn't speak a whole sentence without gasping for air.

Feel free to bombard with questions. I'm a Leo, I like to talk about myself.

 

[Agian]

Feel free to bombard with questions. I'm a Leo, I like to talk about myself.

Really, really? I'm a Leo too and I can talk with my head under a bucket of water.

 

[river-wear]

Ha, I'm a Leo and I'd rather be alone... even though I do pipe up on here a lot lately!

Happy soon-to-be Birthday to all of us!

 

[Rachel]

Hey folks! A doctor first mentioned the sound of a heart murmur to me when I was about 20 years old. I had an EKG at that time, and it was fine.

Fast forward about 25 years. I had noticed an occasional flutter in the past year or two but really hadn't thought about the murmur at all. No doctor really showed an interest in all these years, so why worry? Then my dad, who also had a murmur, is diagnosed with severe aortic stenosis and had valve replacement (which didn't go well due to a variety of complications).

I decided to get my murmur checked out and was diagnosed with mild aortic stenosis. The report doesn't mention aortic regurgitation but does mention mild or trace tricuspid and mitral valve regurgitation. The AV leaflets are thickened and fusion of 2 cusps can't be ruled out per the report.

What I am wondering is what the sound of the murmur was 20 years ago if everything is still "mild" now? Also, anyone know what the deal is with the regurgitation of the other valves? Could that be related to the aortic valve stenosis?

I didn't have the report when I met with the cardiologist and would have been too stunned to ask much anyway. Any info is helpful!

Carla

Hi Carla,

Sorry to hear about your dad's complications and your stenosis. My murmur was not detected until I was 45 years old - I only went to the doctor because I almost passed out while driving my car....only to be given an EKG (which was normal) So its been my understanding that an EKG is fairly useless in determining the condition of the heart valves.

I can't believe that my murmur wasn't detected sooner - so the whole murmur thing is a mystery to me.

I agree with Debby “trace” doesn’t mean much – I’ve got trace regurgitation on all my other valves as well and I’m not worried about it - wasn’t an issue for my surgeon when I went in for my surgery – not an issue for me either.

Yeah, don’t take up running if you hate it – DO get check-ups (echoes) on a regular basis though!

Ha, I'm a Leo and I'd rather be alone... even though I do pipe up on here a lot lately!

Happy soon-to-be Birthday to all of us!

BTW – I’m a LEO as well – I also like my alone time – Happy Birthdays to all us Leos!!!!

 

[epstns]

Hi, Carla, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. You have found the best internet site to learn about heart valve surgery - from folks who have first hand knowledge of the subject. We are not medical clinicians. We are and have been patients, just as you are.

Murmurs often get more pronounced as valves progress from trace issues, to mild, to moderate, severe and possibly critical. I was first diagnosed at age 51 with moderate-to-severe aortic stenosis. I never knew anything about it before that. The first I heard was when a doctor (not a cardio) asked me "How long have you had that murmur?" He then went on to say "I don't want to alarm you, but I advise you to have that evaluated sooner rather than later." It took my valve almost 12 more years to progress to the point where surgery was "right."

During the first few months after diagnosis, I was paranoid -- afraid to think of the future at all, as I didn't know how much of a future I had. I had been a very active athlete, running daily, rain, snow or sun, lifting moderate weights, etc. - but my "heart was no longer in it." Then I found this site, and all the "regulars" here. They helped me to understand that my diagnosis (and yours, too) was not a death sentence, and that as long as I followed the advice of a competent and trusted cardiologist I could live a normal life (well, as normal as any of US ever are. . . ) until or unless the time came to have surgery. I also learned that once we get through the surgery and recovery, for the most part life goes back to relative normalcy. No, it is not the same. Yes, it is a good life, and it is what we make of it. I claim to have hit many (most?) of the speed bumps on the road to recovery, yet I'm still having a much better life than I had for the year or two just before surgery.

I'm glad you've found us here. The purpose of this site is to help folks like yourself to understand what is going on now and what is likely to happen as time goes on. We also can help you to realize that even though the valve surgery may be the "biggest" event ever in your life, to your medical/surgical team it is truly just "another day at the office" and regardless of what happens, they know how to deal with it. Also, in the long run, no matter what happens and how it turns out, your life will be better than it would have been if you had chosen not to have the surgery.

Hang around, ask all the questions you want to. We'll do our best to help you through it, just as many others have done for us.

 

[tom in MO]

Per "EKG is fairly useless in determining the condition of the heart valves." I know that in my case, my EKG at my primary care physician was so bizarre, he drove me to the hospital emergency room to have it evaluated. (I was the last patient of the day). He knew it was my stenosis, but he was afraid I was going to kick the bucket. When the cardio on call got back from dinner and evaluated my EKG, she said my EKG showed severe stenosis but was not an immediate emergency and they let me leave. They also checked to make sure I was scheduled for surgery like I said.

 

[river-wear]

I had a bizarre EKG with inverted T-waves when I was having a lot of PVCs a week after surgery. They were puzzled more than worried, but I had a new echo shortly after. It wasn't until the next day I went into a-fib. I think my heart was confused.

Looks like they extrapolated valve condition based on ventricle enlargement from the EKG. http://www.nhlbi.nih.gov/health/health-topics/topics/hvd/diagnosis.html