New and Need Advise - Aortic Stenosis

[rich01]

Over the last 2+ years, I have had 3 echo-cardiograms at different clinics. They all tend to use different abbreviations so I am having trouble matching them up. I have seen 4 cardiologists over the last 4 or 5 years, and the current one is best, but still leaves a lot to be desired. He was the 1st one that actually told me heart surgery was in my near future, the others never even mentioned surgery. He labeled it moderate to moderately severe aortic stenosis. I am mostly symptom free.

One cardiologist thought I had a bicuspid aortic valve, one thought it was tricuspid, and the current one thinks it is tricuspid because of my age (69). I asked the current cardiologist about a calcium scan and he explained why I didn't need it. I was tired from being there 2 hours longer than expected and can't remember a single reason why he said I didn't need it.

So my questions (I have a lot more):
1. What is the best test to determine if I have a bi or tricuspid aortic valve, and what is the best noninvasive test to determine same?
2. Would a calcium heart scan be beneficial?
3. Is the aortic valve included in basic calcium scan or is it a separate test?

Feel free to add any other info you think might be helpful.

Thanks

 

[Paleowoman]

Hi Rich,

1. The best non-invasive test to determine if your valve is tricuspid or bicuspid is an echocardiogram, plus listening to your heart as they can often tell if it's bicuspid by the sound which is different from tricuspid. An invasive test would be a transoesohageal echocardiogram. I'm sure I've read that sometiems they don't know which the valve is until they do surgery though.

2 and 3. A calcium scan could be done if they looking to see if you have atherosclerosis - blocked coronary arteries where the calcium shows up. That wouldn't necessarily show if your valve was bicuspid or tricuspid but any calcification in the valve would show up in such a such a scan.

Do you know your pressure gradients and the aortic valve area results from your echos ? They are useful things to know.

I was symptom free all the way to when I had aortic valve surgery. I had a bicuspid valve, first discovered from the murmur when I was 25 but I didn't have surgery until I was 60.

 

[rich01]

Thanks Paleowoman. All 3 electrocardiograms were inconclusive as to whether I have bicuspid or tricuspid.
2016 echo - It is probably trileaflet.
2017 echo - Echodense, probably bicuspid AV
2018 echo - Couldn't tell from echo, thought it was trileaflet because of age

I thought I remembered reading that a CT scan could be used to determine the type of valve and it was better than echo. I don't remember the name, but I believe they also can go through artery in leg and view the aortic valve to determine whether it is bi or tricuspid. This is where I was hoping someone could tell me the name of non-invasive test to determine valve type.

This is critical for me because it likely will determine whether I can have TAVR or have to have AVR.

This is from my most recent electrocardiogram (2018).

The aortic valve is moderately calcified. The right coronary cusp appears to be fixed. There is mild aortic regurgitation. There is moderate to moderately severe aortic stenosis (AVA=0.79cm[SUP]2[/SUP], Peak grad=61mHg. Mean grad = 39mmHg, LVOT dia = 1.90cm).

2017 AVA 1.28 cm[SUP]2[/SUP]
2018 AVA 0.79 cm[SUP]2[/SUP]

 

[Paleowoman]

I thought I remembered reading that a CT scan could be used to determine the type of valve and it was better than echo. I don't remember the name, but I believe they also can go through artery in leg and view the aortic valve to determine whether it is bi or tricuspid. This is where I was hoping someone could tell me the name of non-invasive test to determine valve type.]

You might be thinking of angiogram. The CT angiogram is non-invasive but the angiogram where they go through an artery isn't. Prior to AVR I had a CT angiogram which first gives a calcium score as in EBCT scan and then you have a dye that is injected and shows up the coronary arteries and valve - I'm really not sure how much it can show whether the valve is bicuspid or tricuspid.

 

[honeybunny]

Welcome to the site, Rich.

My stenosed, bicuspid AV was identified by an echo but to determine the calcification my cardio did the TEE (transoesohageal echocardiogram). I am not a numbers person so I can't give you any information on my readings. All I knew is that I had to have surgery soon.

Keep us posted as thing progress.

Hugs,
Michele

 

[tom in MO]

richO1, I had a bicuspid valve that they could tell straight out due to my heart murmur and echo cardiogram. Age won't rule out tri or bi cuspid valve, since you've had it since birth. Not everyone with a bicuspid valve has to have it replaced. Only when it causes problems does it require valve replacement. In my view, the important result that comes out of an echo is whether or not you need surgery now and if not is your condition getting worse.

 

[tom in MO]

I have a bicuspid aortic valve and am told I'm moderate to severe stenosis with a leaky valve. I just saw my surgeon for the first time yesterday and he is recommending I get a St Jude mechanical valve. I'm 57 years old and do not have any symptoms but I don't want to wait until I do. I really was thinking about a tissue valve because I don't like the idea of being on blood thinners the rest of my life but I also don't like the idea of having another surgery in 10-15 years. I would like to get others thoughts on this.

I chose mechanical at age 55. I've had my share of surgeries and didn't want more, but guess what I did Warfarin and home testing is not too much of a PITA. I have a St. Jude and it has a low INR range of 2-2.5. My only complaint is that my doctors won't let me take nonsteroidal antinflamatory (NSAIDS) drugs for my arthritis since I am on warfarin. NSAIDS can cause stomach bleeding which is made worse by warfarin.

 

[Dodger Fan]

I have a bicuspid aortic valve and am told I'm moderate to severe stenosis with a leaky valve. I just saw my surgeon for the first time yesterday and he is recommending I get a St Jude mechanical valve. I'm 57 years old and do not have any symptoms but I don't want to wait until I do. I really was thinking about a tissue valve because I don't like the idea of being on blood thinners the rest of my life but I also don't like the idea of having another surgery in 10-15 years. I would like to get others thoughts on this.

I have had a St Jude mechanical valve since January 2016. I test my INR at home and I don't have any complaints about the process. My involvement in my successful INR management is less than 10 minutes per week (this includes taking pills, loading my pill box, testing and reporting my results).

I was monitored for 18 years. I didn't have severe symptoms, yet when I had surgery, the surgeon said I had a "drop dead valve". I agree with your decision to not wait too long.

 

[Paleowoman]

I have a bicuspid aortic valve and am told I'm moderate to severe stenosis with a leaky valve. I just saw my surgeon for the first time yesterday and he is recommending I get a St Jude mechanical valve. I'm 57 years old and do not have any symptoms but I don't want to wait until I do. I really was thinking about a tissue valve because I don't like the idea of being on blood thinners the rest of my life but I also don't like the idea of having another surgery in 10-15 years. I would like to get others thoughts on this.

Hi Markj ask your surgeon for his/her opinion about the very new tissue valve from Edwards called Inspiris Resilia which is disigned to last much, much longer than the previous generation of tissue valves and is being given to patients much younger than you. It is very new so not all surgeons are using it. Of course we cannot know for sure how long this new generation of tissue valve will actually last. There is no guarantee when it comes to valves, either tissue or mechanical.

 

[knotguilty]

I'll throw my two cents in, the supposed difinitve test for a bicuspid valve is the TEE. That gets right up next to your aortic valve. Second, I've never heard of a calcium test. They will tell a lot by your cholesterol level. Lastly I had an Edwards Tissue Valve at the age of 55. I am now 61. I saw my cardiologist just a couple weeks ago and he told me the tissue valves are lasting a very long time and I could go the rest of my life without any problems. There are no guarantees and I don't know if I necessarily believe it but I am hopeful. Otherwise I feel great.

 

[knotguilty]

I'll throw my two cents in, the supposed difinitve test for a bicuspid valve is the TEE. That gets right up next to your aortic valve. Second, I've never heard of a calcium test. They will tell a lot by your cholesterol level. Lastly I had an Edwards Tissue Valve at the age of 55. I am now 61. I saw my cardiologist just a couple weeks ago and he told me the tissue valves are lasting a very long time and I could go the rest of my life without any problems. There are no guarantees and I don't know if I necessarily believe it but I am hopeful. Otherwise I feel great.

 

[libra rising]

I've never heard of a calcium test.

If you do a search for CAC (Coronary artery calcium) you'll find plenty of info to digest. Seems about the best information to determine heart risk.

They will tell a lot by your cholesterol level.

I'm not sure what you mean by this, but increasingly cardiologists on both sides of the pond, researchers, engineers etc are debunking the traditional view of high cholesterol being linked to heart risk. Just as many people with low cholesterol have heart attacks. LDL is no longer 'bad' cholesterol.

The best take-away from a lipid panel is the trigs/HDL ratio. Since (a) the problem is NOT high cholesterol or high LDL, but high levels of oxidised LDL, then (b) the higher the level of triglycerides, particularly in relation to HDL, the more oxidised LDL you'll have.

Feel free to ask questions
Geoff