Hard to trust many doctors

[MarkZ]

I thought my gradient at 60 mm was considered bad. You top mine, don’t know why valve surface area appears moderate and not severe. Go get your surgery you probably have crap hanging on valve waiting to be dislodged and potentially could mean lights out. I regret not doing mine sooner and being scared. That’s a steep drop off where you are on your gradient. Mortality rate will exponentially go up as time marches forward. Glad it’s in my rear-view mirror , good luck.

"Crap hanging on valve" is exactly what I had. And it led to a heart attack two years ago, at age 41. 100% blockage of the LAD (for those who don't know, the LAD is the coronary artery that some call "the widowmaker"). Fortunately, it happened at work and I work in a pathology department which was 5 floors up from the ER. I was stented within an hour, so no lasting problems with my heart. If it happened at home, I may not have been so lucky. The doctors diagnosed me with coronary artery disease which is what they tend to do after a heart attack.

Here I am two years later and I've had two of the top surgeons in the country (Svensson and Bavaria) both independently tell me I have no signs of coronary artery disease and that the most likely culprit was the severe calcifications on my aortic valve dislodged and blocked my LAD. Svensson (who did the surgery) said the valve was "like sandpaper" when he took it out. He also said that patients with such severe calcifications often present with stroke.

In hindsight, I should have had it done 2+ years ago to avoid the heart attack -- back when I was "moderate"! It wasn't the gradients that almost killed me, it was the calcifications.

 

[user 15848]

I just turned 66 and have been diagnosed with severe AS. My symptoms are mild. Usually some chest tightness when I’m stressed and exerting. Mean gradient on longevity. All replies welcome. Thanks.

I was 63 and on the wait and see line; went for a tour to a hilly town and my wife had to pull me around with my belt because i was just so tired going up hills, two weeks later i went to do my laundry in the basement and found my self on the floor with a twisted ancle, i passed out some how; At that point, i call the cardiologist and told him to "Yes" lets do this now; I was offered choice of Tissue or Mech, and i was honestly leaning towards Tissue, was concerned about click noises; BUT, have 2 sisters that are Doctors, and 10 first cousins on same boat, i am the renegade of the family became a mathematical engineer, and the 12 Doctors told me "go mech"; so i thought about it, and came to the decision of going mech not because the 12 doctor relatives said so, "my cardiologist insisted tissue ???? ", and i did so to reduce to a minimum the Probability of GOING back to a hospital with a Wuhan Virus or not around; one thing is 63, another 77, and to go AGAIN through all the SYMPTOMS and associated issues "FOR ME", was not worth it vs taking a pill; how many millions of people take a pill every day ?; So, is 6 years now, and i dont even hear a noise; just happy i dont see cardiologists every 6 months nor have to be wondering if 10 years from now the valve needed replacement now, or soon later; and again , the Big Pharma TAVI story sounds great, but is not 100% possibility, you may need another OHS to get your second Tissue valve because inserting a valve inside an existing valve not ALWAYS is possible, simple science and numbers,

Lots of personal experiences here, and yes, Warfarin is a variable that needs attention, but some people on tissue valves end up taking warfarin at the end due to OTHER conditions; so....., Read, Investigate and Inform yourself, because at the end; the SURGEON will tell you what they told me

"What is your choice ??? " ---- They put it on us, so is not their culpa....

 

[Chuck C]

Thanks for sharing your experience. You present an excellent example of doing good due diligence.

"my cardiologist insisted tissue ???? ",

And yet you still chose mechanical.

have 2 sisters that are Doctors, and 10 first cousins on same boat, i am the renegade of the family became a mathematical engineer, and the 12 Doctors told me "go mech";

I'm guessing that they were not on the payroll for Edwards Lifesciences as consultants

and i did so to reduce to a minimum the Probability of GOING back to a hospital with a Wuhan Virus or not around; one thing is 63, another 77,

An excellent point which surprisingly few patients, and sadly not enough surgeons, think about.

the Big Pharma TAVI story sounds great, but is not 100% possibility, you may need another OHS to get your second Tissue valve because inserting a valve inside an existing valve not ALWAYS is possible, simple science and numbers,

This is a very good point. Going valve in valve through the leg for the next operation is not a certainty. It is a hope and not all will be eligible. They are doing TAVR on younger patients now and I was evaluated for TAVR at age 53, just to know whether it would be an option for me. My local cardiologist was of the opinion that I should wait as long as possible and then go TAVR. He told me he had some patients that had mean pressure gradients over 90mmHg and still had no symptoms. I am very glad that I sought other opinions. Ultimately I received 6 opinions, between cardiologists and surgeons and feel that my local cardio was an outlier way off the mark. Oh, and it was concluded that I was not a good candidate for TAVR due to the distribution of my calcification. So, no, it is not at all a certainty that this will be an option for everyone down the road.

I am truly grateful to the valve manufacturers that invest millions to improve upon valves. Over the decades the end result has been better quality valves that extend the life expectancy of valve patients. And, I am not one to sound the gong, generally, warning about Big Pharma or Big Medicine. In my view, we are better off for it, having them invest billions annually in new medical devices and medications that lead to better quality of life and longer lives. But, nevertheless, there should be an awareness that the manufacturers get significantly more revenue if they have repeat customers. Tissue valves= repeat customers. And especially if they get a TAVR on the next round, which go for approximately $25,000 per valve, vs approximately $ 5,000 for a normal tissue or mechanical valve. The goal of any business is to increase profits and there will be a natural tendency for them to try to influence the market in the direction which increases their bottom line. It always pays to be an educated consumer. It helps us sort through the noise of marketing and make the best decision that will give us the best chance at having a normal lifespan and quality of life. Sometimes the best choice is mechanical and sometimes it is tissue, but best to be aware that there will be a lot of noise trying to influence the decision and not all of the noise will have your best interest in mind.

 

[Critter]

I have to agree with everyone here to go get er done. One of my lab personnel is same age as I am and her aortic opening is .6 and she was going to go in for stress test and cardiologist said what’s the point. So she is going the Tavr route. I have been on the manufacturer’s site and the stuff on it looks better than I thought. I really didn’t consider much of an option when I read the annulus of a bicuspid valve is more problematic in replacing . Dunno, I went the chest crackin way and don’t regret that my valve is right where it needs to be and bonus he tied off my left atrial appendage so no afib. It’s a personal decision, but get er done you r on steep curve now.

 

[vitdoc]

The decision to have aortic valve surgery is made for several reasons. First a high gradient second left ventricular wall thickening and symptoms. It is well known that severe AS can lead to sudden death due to ventricular arrhythmia even without overt symptoms. So reading and interpreting the B scan of the heart is important. When I had my first valve surgery at age 29 I was playing full court basketball and was relatively asymptomatic. But I had evidence of a very significant gradient and cardiac hypertrophy. I was scheduled for surgery in a few months. I "fainted" playing basketball woke up within a minute. When the cardiologist found out about this I had the surgery pushed up to a few weeks.

Some of the parameters on the B scan are directly measured such as the wall thickness. Some are indirectly measured such as the gradient partially based on the speed of the blood leaving the aortic valve which is measured by the Doppler shift. I believe the valve area is calculated from other parameters.
So depending on the quality of the study there can be some variability in the values. One looks for expected responses to the values obtained.
For example if the gradient is very high one would expect that the left ventricular wall thickness would be abnormally thick. So if that is not the case then maybe there are some issues with the study and the study should be repeated (perhaps elsewhere) to see if there are any flaws with the study.

It sounds like maybe the gradient that is calculated is too high. But there probably is a significant gradient but maybe not as high as mentioned. So valve surgery is likely to be needed soon but maybe not immediately. Needs retesting to be sure. Also the electrocardiogram can show evidence of wall thickening and is helpful in putting the whole story together.

 

[almost_hectic]

When you're told its time, its often hard to grasp. I was in that club, didn't believe it, found a new doctor who redid all the test. Said, yup its bad, do it now. It finally sunk in and afterwards my surgeon said I was lucky I made it there alive, they said when they opened me up I was in bad shape. My guy actually used the ticking time bomb line also, must be a common way to say it. And I had no symptoms.

 

[Chuck C]

My guy actually used the ticking time bomb line also

i’m beginning to think that in surgery school they must use this phrase as the technical term, because my surgeon used that line also.

 

[almost_hectic]

i’m beginning to think that in surgery school they must use this phrase as the technical term, because my surgeon used that line also.

It is a perfect analogy. For me it was in regards to my aneurysm, and if that lets go, its too late to do surgery... no time left.

 

[cldlhd]

"Crap hanging on valve" is exactly what I had. And it led to a heart attack two years ago, at age 41. 100% blockage of the LAD (for those who don't know, the LAD is the coronary artery that some call "the widowmaker"). Fortunately, it happened at work and I work in a pathology department which was 5 floors up from the ER. I was stented within an hour, so no lasting problems with my heart. If it happened at home, I may not have been so lucky. The doctors diagnosed me with coronary artery disease which is what they tend to do after a heart attack.

Here I am two years later and I've had two of the top surgeons in the country (Svensson and Bavaria) both independently tell me I have no signs of coronary artery disease and that the most likely culprit was the severe calcifications on my aortic valve dislodged and blocked my LAD. Svensson (who did the surgery) said the valve was "like sandpaper" when he took it out. He also said that patients with such severe calcifications often present with stroke.

In hindsight, I should have had it done 2+ years ago to avoid the heart attack -- back when I was "moderate"! It wasn't the gradients that almost killed me, it was the calcifications.

So you saw both of them eh? You famous? Seriously though Bavaria was my surgeon, I like to say was cuz hopefully I won't need him again but in regards to the coronary artery disease I wonder how much of that is a judgment call? When I first was diagnosed with my BAV an aneurysm They gave me a CT angio and told me that the same artery, the Widowmaker, was a certain percentage blocked. I can't think of what it was on the top of my head right now though. So before my surgery 6 months later I had a cardiac cath done as they said that's the gold standard and the surgeon performing the cath said that my arteries were large and totally free and clear and in his opinion I didn't even need the procedure. I never didn't get a copy of the cath report though. The conclusion was that I must have calcium inside the walls of the artery (aka hardening of the arteries); that showed up in the CT scan but there's nothing blocking the flow. Fast forward a couple years and I get another CT angio and they list the percentage as lower than the first time? But I am listed as having coronary artery disease.

 

[almost_hectic]

Fast forward a couple years and I get another CT angio and they list the percentage as lower than the first time? But I am listed as having coronary artery disease.

That makes me mad. Ive had so many things get put into my medical records that were either inaccurate or just plain wrong. But once they go in the file they NEVER come out and just follow you for years. Whether its my fault or the doctors faults. Once they are in the file they literally cannot be taken out or even corrected. I once answered a question on a form incorrectly because I misunderstood it. It asked if I have ever been told I had heart disease. Thinking to myself, "Well Ive been told I have Congenital Heart Disease" so I answered yes. Totally not realizing at that moment they meant Coronary Artery Disease... so I answered incorrectly. My arteries are clean as a whistle! But even my cardiologist can't correct the file and I get questioned on it all the time by other physicians. Thats just one example, but Ive had other similar things put in my file by doctors who were guessing rather than diagnosing... still in there. I don't know who is to blame for this manner of record keeping. But it makes it hard to trust doctors when I see some of the things they put in my file.

 

[cldlhd]

That makes me mad. Ive had so many things get put into my medical records that were either inaccurate or just plain wrong. But once they go in the file they NEVER come out and just follow you for years. Whether its my fault or the doctors faults. Once they are in the file they literally cannot be taken out or even corrected. I once answered a question on a form incorrectly because I misunderstood it. It asked if I have ever been told I had heart disease. Thinking to myself, "Well Ive been told I have Congenital Heart Disease" so I answered yes. Totally not realizing at that moment they meant Coronary Artery Disease... so I answered incorrectly. My arteries are clean as a whistle! But even my cardiologist can't correct the file and I get questioned on it all the time by other physicians. Thats just one example, but Ive had other similar things put in my file by doctors who were guessing rather than diagnosing... still in there. I don't know who is to blame for this manner of record keeping. But it makes it hard to trust doctors when I see some of the things they put in my file.

I mean if I have calcium in the walls of my coronary arteries well I guess then technically I do have coronary artery disease but it just sounds a lot worse than it is I guess, at least in my mind. I mean I picture a lot of clogged arteries when I hear that and they told me my arteries were clear. Also since that original diagnosis I am eating better, cholesterol is good, I walk, ride a bike , work out a bit etc so I'm in pretty good shape. But I know what you mean If you look at the medical file and the list they have you start to wonder if you're going to make it out of the office

 

[Chuck C]

But once they go in the file they NEVER come out and just follow you for years.

I have experienced this as well.

Just make sure that they don't put "Difficult Patient" in your file

 

[cldlhd]

I have experienced this as well.

Just make sure that they don't put "Difficult Patient" in your file

Seems like there's always a Seinfeld reference for whatever the situation is

 

[almost_hectic]

Seems like there's always a Seinfeld reference for whatever the situation is

There is, that’s what makes it such a great show! Or I should say made

 

[Chuck C]

There is, that’s what makes it such a great show! Or I should say made

Best comedy show of all time.

 

[Critter]

"Crap hanging on valve" is exactly what I had. And it led to a heart attack two years ago, at age 41. 100% blockage of the LAD (for those who don't know, the LAD is the coronary artery that some call "the widowmaker"). Fortunately, it happened at work and I work in a pathology department which was 5 floors up from the ER. I was stented within an hour, so no lasting problems with my heart. If it happened at home, I may not have been so lucky. The doctors diagnosed me with coronary artery disease which is what they tend to do after a heart attack.

Here I am two years later and I've had two of the top surgeons in the country (Svensson and Bavaria) both independently tell me I have no signs of coronary artery disease and that the most likely culprit was the severe calcifications on my aortic valve dislodged and blocked my LAD. Svensson (who did the surgery) said the valve was "like sandpaper" when he took it out. He also said that patients with such severe calcifications often present with stroke.

In hindsight, I should have had it done 2+ years ago to avoid the heart attack -- back when I was "moderate"! It wasn't the gradients that almost killed me, it was the calcifications.

. That was some story. I know I had a ct calcium score done as a test patient and it was “7”, & at 400 it is advised to get studied with a heart cath. In retrospect all the calcium was sitting on valve, close to the right and left coronary ostia. Maybe that explains the chest pain with no significant coronary artery disease for you and me.
Perhaps the pain comes from Aortic root dilation. Fascinating….

 

[cldlhd]

Best comedy show of all time.

That's why when I was in New York 4 years ago with my wife and son when we ended up sitting in a booth right next to Jerry having breakfast I didn't say anything to him. I got the impression he wouldn't have been very receptive and if he was a real **** about it it might have ruined the show for me a bit.

 

[rich01]

I just turned 66 and have been diagnosed with severe AS. My symptoms are mild. Usually some chest tightness when I’m stressed and exerting. Mean gradient on echo 86 and av diam is 1.2. I feel my cardiologist who specializes in AVR is pushing me too soon to surgery so I went out on my own to find a surgeon who specializes in valve replacement surgery who had tremendous reviewed. I can walk two miles with some normal tiredness but. I thing major. Two questions... would you get surgery sooner than you needed too and what valve would you or have you received? I feel if I don’t do mechanical why not do tavr as there seems no difference in durability. I’m leaning mechanical if I do open heart because of the longevity. All replies welcome. Thanks.

I will tell you what I did and I am happy with my decision. It may or may not be right for you.

I had TAVR when I was 70. I had severe aortic stenosis, minimal symptoms, and could work in the yard for hours with no problem. At the time I was exploring options, Medicare did not cover TAVR for low surgical risk patients which I was. I signed up for a clinical trial, which if accepted into, guaranteed I would receive TAVR. About 2 weeks before I was scheduled for TAVR, Medicare changed the policy on TAVR and approved it for all risk categories.

During testing it was discovered I needed 2 stents. I had those done with minimal sedation. Two weeks later I had TAVR. I had minimal sedation until the very end of the procedure when the valve was moved into the proper position. All in all, a very easy procedure. I spent a couple of hours in recovery before being moved to my room. Except for all the almost constant parade of staff through my room, recovery was easy. I was released from the hospital the afternoon of the day after TAVR.

The only problem I had in recovery was I think I pushed it too much and lifted something heavier than I should have the first few days. I opened the incision in my groin a little and had blood pool in my groin. It was a little painful for a week or so but healed with no medical treatment required. I was driving after the 1st week.

The only real question is when will I have to have the valve replaced? They should be able to do a TAVR in TAVR, so the procedure should be similar to the one I already had. If I can get 8 to 10 years on my 1st valve, I will have made the right choice for me. As technology improves, tissue or synthetic valves should be able to last longer.

TAVR might or might not be right for you, but I think it is something worth discussing with your cardiologist. In some parts of the world, it is called TAVI.

 

[Chuck C]

Please keep us posted on the results for your follow up echo. Given the significant discordance between your valve area (AVA) and your mean pressure gradient (MPG), the follow up echo will be very important to see if there was some sort of measurement error in the first.

 

[MarkZ]

Once they are in the file they literally cannot be taken out or even corrected.

This isn't actually correct though. You can remove conditions, you just need your doctor's approval. MyChart even offers the ability to do it all within the app. Obviously, the original record won't be removed, nor should it be.

In my case, my cardiologist specifically told me "you don't have coronary artery disease" at my last visit with him, and he based that opinion on the results of the cath. He also said that if I had it, even if it wasn't dire, they would have bypassed the artery while they were in there. So the fact that they chose not to bypass any is pretty good evidence that I don't have CAD, I think. But short of examining every artery with IVUS, I don't think there's a way to tell for certain. But I trust a cath more than I trust a guess based on a previous heart attack when I know I had significant valve calcification! So I'm going with no CAD.