Valve size and progression

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Stowegirl

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I know that there are other details and measurements to take into account, but who else has had a valve size of around 0.85 cm and was still not operated on for a couple of years; oviously dependant on other figures and symptoms.
 

nobog

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0.85 cm would be about the size of a dime. It really depends on the "real" size of your aortic valve. A smaller female might have a 19mm tissue anulus whereas a larger adult male might go as large as 29mm tissue anulus. There is a large variability in replacement valves. Some "new" 19mm replacement tissue valves could measure 0.85 cm out of the box, others up to 1.5 cm. A mechanical valve might be 1.5 cm for a 19mm. Larger tissue and mechanical valves (27mm) might measure around 3 cm. It depends on your body frame size as to the size of your aortic valve.
 

Paleowoman

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Oh Im sorry, im referring to that being the size of my valve before surgery.
Your valve size measured by echocardiogram is not a physical measure of the valve size, it is a measure done by equations with variables based on technicalities. On my pre-surgery echo done two months prior to surgery, the technician measured my aortic valve area as “0.89cm2 using TVI” and “0.85cm2 using Vmax”. Prior to that the aortic valve area was never expressed, it was the mean and peak pressure gradients and their increasing change which indicated to my cardiologist the time nearing valve replacement and referral to cardiac surgeon. Cardiologist though told me that prior to referral my aortic valve area was around 1cm2 or a bit more than that - I have a small annulus. (Btw, I probably had surgery too early but that would be difficult for me to prove and pointless since it’s been done).

Please contact both Kings and your GP regarding all this. Your GP should have also referred you to a cardiologist. A person, a least someone in the UK, normally only sees a cardiac surgeon on referral for surgery, at surgery and for “discharge" some weeks after surgery, after that you will need to be followed by a cardiologist.
 
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Freebird

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Your valve size measured by echocardiogram is not a physical measure of the valve size, it is a measure done by equations with variables based on technicalities. On my pre-surgery echo done two months prior to surgery, the technician measured my aortic valve area as “0.89cm2 using TVI” and “0.85cm2 using Vmax”. Prior to that the aortic valve area was never expressed, it was the mean and peak pressure gradients and their increasing change which indicated to my cardiologist the time nearing valve replacement and referral to cardiac surgeon. Cardiologist though told me that prior to referral my aortic valve area was around 1cm2 or a bit more than that - I have a small annulus. (Btw, I probably had surgery too early but that would be difficult for me to prove and pointless since it’s been done).

Please contact both Kings and your GP regarding all this. Your GP should have also referred you to a cardiologist. A person, a least someone in the UK, normally only sees a cardiac surgeon on referral for surgery, at surgery and for “discharge" some weeks after surgery, after that you will need to be followed by a cardiologist.
Just curious, why do you say you probably had surgery too early?
 

Stowegirl

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Feb 17, 2020
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Your valve size measured by echocardiogram is not a physical measure of the valve size, it is a measure done by equations with variables based on technicalities. On my pre-surgery echo done two months prior to surgery, the technician measured my aortic valve area as “0.89cm2 using TVI” and “0.85cm2 using Vmax”. Prior to that the aortic valve area was never expressed, it was the mean and peak pressure gradients and their increasing change which indicated to my cardiologist the time nearing valve replacement and referral to cardiac surgeon. Cardiologist though told me that prior to referral my aortic valve area was around 1cm2 or a bit more than that - I have a small annulus. (Btw, I probably had surgery too early but that would be difficult for me to prove and pointless since it’s been done).

Please contact both Kings and your GP regarding all this. Your GP should have also referred you to a cardiologist. A person, a least someone in the UK, normally only sees a cardiac surgeon on referral for surgery, at surgery and for “discharge" some weeks after surgery, after that you will need to be followed by a cardiologist.
I was never referred to a cardiologist as such. I was immediately referred to a surgeon because the echocardiogram had been read wrongly. It classed me as critical and when I arrived at the surgeons office that Id been referred to, he doubted the measurements and said if they had been correct, he wouldn't have let me home. As it happens he did more testing and it was found that my valve size was actually 1.1cm. I have continued to see him since.
 

Paleowoman

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Just curious, why do you say you probably had surgery too early?
It’s principally through the echocardiograms I've had post surgery, I’ve had so many and learned various things about echo numbers. My post surgery numbers on echo, the valve area size, the pressure gradients and the ejection fraction are virtually the same as pre-surgery - right from immediately post surgically (actually the valve area size is smaller at 0.76cm2 because I have moderate patient prosthesis mismatch), and because the bicuspid aortic valve when excised was reported as only moderately calcified - I was actually completely asymptomatic on referral, so again that makes me think surgery was done too early. I think a stress/exercise echo would have been a good thing to have had done pre-surgery to check things more thoroughly.
 
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Freebird

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It’s principally through the echocardiograms I've had post surgery, I’ve had so many and learned various things about echo numbers. My post surgery numbers on echo, the valve area size, the pressure gradients and the ejection fraction are virtually the same as pre-surgery - right from immediately post surgically (actually the valve area size is smaller at 0.76cm2 because I have moderate patient prosthesis mismatch), and because the bicuspid aortic valve when excised was reported as only moderately calcified - I was actually completely asymptomatic on referral, so again that makes me think surgery was done too early. I think a stress/exercise echo would have been a good thing to have had done pre-surgery to check things more thoroughly.
This is an interesting take as I'm currently being watched and asymptomatic. I'm in severe stenosis category and surgeon said I could do it now or wait for them to 'twist my arm,' meaning until they see tests indicating worsening. It's been about a year and a half and I go for my next (4th one) echo in a couple of weeks. I must admit that mentally, it's starting to weigh on me, so I may just give in and move forward with it. Maybe I'll ask for a stress test?
 

Stowegirl

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This is an interesting take as I'm currently being watched and asymptomatic. I'm in severe stenosis category and surgeon said I could do it now or wait for them to 'twist my arm,' meaning until they see tests indicating worsening. It's been about a year and a half and I go for my next (4th one) echo in a couple of weeks. I must admit that mentally, it's starting to weigh on me, so I may just give in and move forward with it. Maybe I'll ask for a stress test?
You sound like me Freebird. I’ve been living with this for 2 years now and I’ve been severe for the last 6 months. The surgeon said now is the time but various other things have come up in the work up for surgery which have been looked into. They know that I wanted to delay it a bit if I could but now I’ve heard nothing and it is weighing heavily on me too. Gets a bit scary because im reasonably asymptomatic I think and now I just don’t know.
 

Freebird

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You sound like me Freebird. I’ve been living with this for 2 years now and I’ve been severe for the last 6 months. The surgeon said now is the time but various other things have come up in the work up for surgery which have been looked into. They know that I wanted to delay it a bit if I could but now I’ve heard nothing and it is weighing heavily on me too. Gets a bit scary because im reasonably asymptomatic I think and now I just don’t know.
One advantage to getting it done now is that it's in our control rather than awaiting for some random series of symptoms. I'm quite torn. Additionally, here in the US, you always wonder if access to healthcare will be available if you wait another year. We're retired but not old enough for Medicare so are part of the Individual market which is always a precarious place to be.
 

Paleowoman

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This is an interesting take as I'm currently being watched and asymptomatic. I'm in severe stenosis category and surgeon said I could do it now or wait for them to 'twist my arm,' meaning until they see tests indicating worsening
I was being watched every twelve months but I was so fit, for example with leg press in the gym I was lifitng 150kg, that's over three times my body weight. But the surgeon said I could have "sudden death" - not because of the weight lifiting, she didn't know I was lifting such heavy weights - but because of the valve, and wanted me to have surgery two weeks later ! I delayed for two months, but it's scary when someone says that, and I didn't know as much as I do now, and I'd never heard of the stress test. Since then, two years after surgery, my cardiologist referred me for stress test, that's when I learned the value of it - btw, if they think it will endanger you they stop the test immediately. Some people genuinely don't have any symptoms but they are in danger of sudden death, for example if there is critical stenosis or heavy calcification, and with some people damage may be being done to their heart due to the strain, they can get enlarged hearts due to that.
 

Freebird

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I was being watched every twelve months but I was so fit, for example with leg press in the gym I was lifitng 150kg, that's over three times my body weight. But the surgeon said I could have "sudden death" - not because of the weight lifiting, she didn't know I was lifting such heavy weights - but because of the valve, and wanted me to have surgery two weeks later ! I delayed for two months, but it's scary when someone says that, and I didn't know as much as I do now, and I'd never heard of the stress test. Since then, two years after surgery, my cardiologist referred me for stress test, that's when I learned the value of it - btw, if they think it will endanger you they stop the test immediately.
Were you in the category of Severe Stenosis? And did your annual echos show worsening/progression?
 

Paleowoman

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Were you in the category of Severe Stenosis? And did your annual echos show worsening/progression?
Depends what measurments you look at: as regards my valve area I was in "severe stenosis" (but I have a small annulus which means that what is regarded as severe in someone with an average size annulus is not the same as in someone with a small annulus - surely ?) but as regards my pressure gradients I was in "moderate stenosis". As regards my ejection fraction I was absolutley fine.
The annual echos showed that the pressure gradients were rising more steeply than they had been on earlier echos.
 

Freebird

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Depends what measurments you look at: as regards my valve area I was in "severe stenosis" but as regards my pressure gradients I was in "moderate stenosis". As regards my ejection fraction I was absolutley fine.
The annual echos showed that the pressure gradients were rising more steeply than they had been on earlier echos.
Ah ok. I'm in severe based on Peak Velocity (4.33 m/s) and Mean Gradient (46 mmHG). Valve area was never discussed with me although as near as I can tell, my last report showed .67 cm2. Ejection fraction 65-70%. I'm guessing these numbers are worse than what you were looking at?
 

Paleowoman

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Ah ok. I'm in severe based on Peak Velocity (4.33 m/s) and Mean Gradient (46 mmHG). Valve area was never discussed with me although as near as I can tell, my last report showed .67 cm2. Ejection fraction 65-70%. I'm guessing these numbers are worse than what you were looking at?
Yes, your numbers are worse than mine were ! My valve area was never discussed either, it's just I noticed it on an echo report. It was the pressure gradients that the cardiologist was concerned about.
 

Protimenow

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I was being watched every twelve months but I was so fit, for example with leg press in the gym I was lifitng 150kg, that's over three times my body weight. But the surgeon said I could have "sudden death" - not because of the weight lifiting, she didn't know I was lifting such heavy weights - but because of the valve, and wanted me to have surgery two weeks later ! I delayed for two months, but it's scary when someone says that, and I didn't know as much as I do now, and I'd never heard of the stress test. Since then, two years after surgery, my cardiologist referred me for stress test, that's when I learned the value of it - btw, if they think it will endanger you they stop the test immediately. Some people genuinely don't have any symptoms but they are in danger of sudden death, for example if there is critical stenosis or heavy calcification, and with some people damage may be being done to their heart due to the strain, they can get enlarged hearts due to that.
The stress test doesn't have to be a physical challeng, like pedaling a bicycle with increasing resistance, or walking on a treadmill that increases its slope. They also have one in which they inject a fluid that puts some kind of stress on the heart.
With bad knees, and a history of popliteal cysts in my knee, they now use the other (I think it's a thallium (a radioactive isotope) test for me.

And, yes, with the physical challenge, they DO stop after a while -- when it looks like it's getting to be too much for you, or you tell them to stop the test.
 

Astro

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Hi Stowegirl,

A valve area less than 1.0 cm2 is considered severe. Valve areas are the easiest echocardiogram measure to understand but not necessarily the most accurate. Valve areas are not directly measured, instead they are calculated from other measurements. It involves squaring so any any measurement error is squared. Mean gradient is a more reliable measurement. 20-40mmHg is moderate, > 40mmHg is severe. Even more reliable than mean gradient is aortic peak velocity. 3.0-4.0 m/s is moderate, > 4.0 m/s is severe.

You are correct that symptoms are really important. A part of symptoms is your exercise tolerance. Before my valve replacement, I never developed any "serious" symptoms like shortness of breath, palpitations or chest pain. However I did have a noticeable decrease in exercise tolerance at the gym.

Different cardiologists have different opinions about when valve replacements should occur. You can always get a second opinion. Having a good chat with your current cardiologist is probably the best first step. Personally, I think that it makes sense that people shouldn't wait until permanent heart damage has occurred before acting.

Frequent echocardiograms and reviews are important because things can change quickly.

Best wishes, thanks for sharing your concerns with us. Many other people are in a similar situation.
 

AnnieP

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I have noticed increased SOB last 12 months and ai
I was being watched every twelve months but I was so fit, for example with leg press in the gym I was lifitng 150kg, that's over three times my body weight. But the surgeon said I could have "sudden death" - not because of the weight lifiting, she didn't know I was lifting such heavy weights - but because of the valve, and wanted me to have surgery two weeks later ! I delayed for two months, but it's scary when someone says that, and I didn't know as much as I do now, and I'd never heard of the stress test. Since then, two years after surgery, my cardiologist referred me for stress test, that's when I learned the value of it - btw, if they think it will endanger you they stop the test immediately. Some people genuinely don't have any symptoms but they are in danger of sudden death, for example if there is critical stenosis or heavy calcification, and with some people damage may be being done to their heart due to the strain, they can get enlarged hearts due to that.
Yes sudden death from aortic stenosis is a known risk but not sure of the rates. My thinking was that having surgery when I was still feeling okay was better than having an operation when I had deteriorated or the aneurysm leaked or worse. I had one incident of blacking out when leg pressing 80kgs felt fine just woke up with a crowd around me!
 
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