Doc reversed the diagnosis

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JohnnyE

Member
Joined
May 31, 2017
Messages
12
Location
Hawley Pa
The first doc said I had severe Stenosis os the aortic valve, he said it would need to be replaced in a year, maybe 5 or 10 or maybe never?
He retired, his partner reevaluated me and said the stennosis is mild at best and my heart is in great shape.
I had the stress test tread mill test with the ultra sound , the second Doc said those tests can be misleading, he said he has listened to 1000's of hearts and mine is just fine, I have no symptoms at all.
That first doc put me through a year of hell with his misdiagnoses, not to mention it made my wife a nervous wreck .
I don't sue anyone as a rule but I am seriously thinking of suing the first doc.
 

rich01

Well-known member
Joined
Aug 23, 2018
Messages
89
Location
Virginia US
How do you know the 2nd doc was right and the 1st one wrong? I'm playing devil's advocate a bit here, because aortic stenosis is very serious and you need to stay on top of it. The 1st couple of cardiologists I saw never even mentioned that valve replacement was highly likely, just come back in a year.

Any chance the 1st doctor said you had aortic stenosis and not severe stenosis? I doubt a doctor would say 1, 5, 10, or maybe never to someone he had diagnosed as having severe aortic stenosis, but he might if he had diagnosed you with aortic stenosis. The other thing is the doctor determines severity based on the echo-cardiogram that is only as good as the equipment used, the technician who performs it, and the person that analyzes it.

For the 1st 3 echos, they weren't able to determine whether I had a bicuspid or tricuspid aortic valve. I had the 4th echo at Duke and I asked the technician if she could tell which I had and she very easily determined it was tricuspid. Better equipment and a better trained tech makes a big difference when it comes to echos.

My stenosis was mild when 1st discovered, 1 year later was moderate, and 2 years later was severe. It's now been 3 years since 1st diagnosed and it has progressed to the point I am scheduled for valve replacement. I didn't have any symptoms for the 1st 2 1/2 years and even now have only mild symptoms.

I would encourage you to stay on top of this. Aortic stenosis does not get better. Probably the best you can hope for is it gets worse very slowly and you never need to have the valve replaced.

Good luck and stay on top of it.
 

JohnnyE

Member
Joined
May 31, 2017
Messages
12
Location
Hawley Pa
I was taken aback by the doc saying , maybe a year, maybe 5 years or maybe never need be re[placed but I assure you he did.
My internist also said he did not hear anything that sounded like severe stenosis, both docs said very mild at best.
 

JohnnyE

Member
Joined
May 31, 2017
Messages
12
Location
Hawley Pa
From what I could learn from doc 2 was that some people with this issue progress very slowly and others more rapidly , he said his own brothers stenosis has been status quo for 15 years , has not gotten any worse since org diagnosis
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
689
Location
kansas city, mo
The first doc said I had severe Stenosis os the aortic valve, he said it would need to be replaced in a year, maybe 5 or 10 or maybe never?
He retired, his partner reevaluated me and said the stennosis is mild at best and my heart is in great shape.
I had the stress test tread mill test with the ultra sound , the second Doc said those tests can be misleading, he said he has listened to 1000's of hearts and mine is just fine, I have no symptoms at all.
That first doc put me through a year of hell with his misdiagnoses, not to mention it made my wife a nervous wreck .
I don't sue anyone as a rule but I am seriously thinking of suing the first doc.
Was this a regular doctor or a cardio? You did not specify. Please specify.
 

jlcsn2015

Well-known member
Joined
Sep 21, 2015
Messages
46
Location
Toronto
Since i was a boy i always told everybody my heart was funny, no one believed it, they all say i was lazy, and so my life went on away from sports and stressful things i knew could not do, In the year 2001 i was walking dizzy almost everyday and went to see another cardiologist, this one send me for all kind of tests and the result was that i had a tri cuspid aortic valve and that my colesterol was high....., ok.... came 2015 drop flat on the floor on the streets 5 times in one day, was sent to another test center, and now..... all of the sudden the new test said i had a Bicuspid Aortic Valve with Severe Stenosis.... point is , that i spent 15 years with all kind of limitations just because some one made a bad call...., but, like the Budhists say "transfrom poison into medicine", negatives into positives.... just a comment
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,701
Location
California
That's why second (or more) opinions are often the best way to get to an accurate diagnosis. You can't blame yourself for trusting your doctor fifteen years ago - but your vitality may have gone in a different direction if you had a doctor confirm what you already felt - that something was wrong with your heart.
 

dornole

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Joined
Jan 5, 2014
Messages
629
Location
Minnesota, US
I hope your treatment plan includes regular echos with the new doc because the progression is unpredictable and failure to monitor even in the absence of symptoms is a potentially fatal error. Personally I would be a little leery of somebody who made the claim “ there’s nothing wrong with your heart” based on a stethoscope. Seems pretty arrogant and outside the standard of care. Maybe it just came out wrong as presented here.
 

catwoman

VR.org Donator
Joined
Sep 23, 2003
Messages
5,978
Location
near Fort Worth TX
Have you had a transesophageal echocardiogram (TEE)? That is more definitive than a regular echo? Some diagnostics reveal more than others.
If — and I stress IF — you are having symptoms of valve problems and a doctor says severe stenosis and you can wait 1, 5, 10 years or maybe never need surgery, you definitely need a 2nd opinion. Severe stenosis should be creating symptoms; some people become accustomed to them and shove them out of their minds (like I did with severe mitral prolapse and regurgitation).
You have to stay on top of your own health and be mindful of any odd symptoms.
 

jlcsn2015

Well-known member
Joined
Sep 21, 2015
Messages
46
Location
Toronto
That's why second (or more) opinions are often the best way to get to an accurate diagnosis. You can't blame yourself for trusting your doctor fifteen years ago - but your vitality may have gone in a different direction if you had a doctor confirm what you already felt - that something was wrong with your heart.
100%, i failed to second guess the result, also, have a big family of doctors, including 2 sisters, and no matter what i said, was alway told "is in your mind" so i got to accept it, so yes, went through a rough path for 15 years, and life could've been different, but, my limitations forced me into a different path, but i am fine with the place life got me to after 67 years; now i focus on making myself happy with the intent of making others happy, no matter what; and achieved my number one goal in life since i am 6 years old, "Escape the Castro Mafia" of Cuba, and do i did, even with a bad heart i managed to escape 33 years ago when the Castrism was in his high point of power, just a comment, thank you for your message,
 

Ladybug

Active member
Joined
Jul 30, 2019
Messages
36
Was this a regular doctor or a cardio? You did not specify. Please specify.
I don’t know where you’re located, but you won’t likely have a successful law suit. Why? Because he can say this was his educated board certified opinion and it MET THE STANDARD OF CARE. The biggest problem is that in America, LOUSY is often the standard of care, with SC, TN, and NM being the worse. I have that on the authority of the best malpractice attorney in SC. I had a class action medical device suit in SC in 1990-1997. I was successful, but I actually had a debilitating surgery in SC and had to go to Cleveland and have four more..one 14.5 hrs long to clean up a SC mess. The problem SC doctor’s allegiance to other doctors far outweighed any patient oath to first do no harm. The smartest thing you can do, is gather your medical records for the various tests like echos, his physician notes after each visit, as well as those for the dr that says you’re perfectly fine, then: get an opinion from an interventional cardiologist that’s done about 500-plus TAVR’s. Try to see this as lucky that it’s been refuted and walk away. The gut wrenching paper work, thd added anxiety isn’t worth it. It will tie you up for years then be thrown out. I understand soooo well your frustrations. Good luck.
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
246
The first doc said I had severe Stenosis os the aortic valve, he said it would need to be replaced in a year, maybe 5 or 10 or maybe never?
He retired, his partner reevaluated me and said the stennosis is mild at best and my heart is in great shape.
I had the stress test tread mill test with the ultra sound , the second Doc said those tests can be misleading, he said he has listened to 1000's of hearts and mine is just fine, I have no symptoms at all.
That first doc put me through a year of hell with his misdiagnoses, not to mention it made my wife a nervous wreck .
I don't sue anyone as a rule but I am seriously thinking of suing the first doc.
Mild, moderate, severe are all interpretations of image reading and tests. I was told forever that I was mild then moderate and when they did my AVR and AAA repair the surgeon told me after surgery the valve was actually severe.
 

Astro

Active member
Joined
Aug 26, 2019
Messages
30
Location
Adelaide, Australia
A repeat echo is needed to clarify how the valve is functioning. Listening with a stethoscope is no substitute for an echo. Even echos have error margins which can be big. Echo trends over time will give you the picture, not a single scan.
Many of us experience misdiagnosis during our heart valve journey. I certainly have. I was told 3 months ago that my valve will be fine for at least 5 years. I felt that this doctor was not considering my valve's regurgitation (my heart was rapidly increasing in size). After more scans and a fresh opinion, I'm on the waiting list for a valve replacement later this year.
If I was you, I would consider getting a third opinion. Let someone with a fresh outlook repeat the echo and decide what your situation is. Not knowing is really difficult to cope with. You can't keep living with such uncertainty. Good luck and keep us updated.
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
689
Location
kansas city, mo
I don’t know where you’re located, but you won’t likely have a successful law suit. Why? Because he can say this was his educated board certified opinion and it MET THE STANDARD OF CARE. The biggest problem is that in America, LOUSY is often the standard of care, with SC, TN, and NM being the worse. I have that on the authority of the best malpractice attorney in SC. I had a class action medical device suit in SC in 1990-1997. I was successful, but I actually had a debilitating surgery in SC and had to go to Cleveland and have four more..one 14.5 hrs long to clean up a SC mess. The problem SC doctor’s allegiance to other doctors far outweighed any patient oath to first do no harm. The smartest thing you can do, is gather your medical records for the various tests like echos, his physician notes after each visit, as well as those for the dr that says you’re perfectly fine, then: get an opinion from an interventional cardiologist that’s done about 500-plus TAVR’s. Try to see this as lucky that it’s been refuted and walk away. The gut wrenching paper work, thd added anxiety isn’t worth it. It will tie you up for years then be thrown out. I understand soooo well your frustrations. Good luck.
Did you read my post? I was asking the original poster about the doctor. I have had no problems here in America, since I was born and raised here in America. But I do agree that there are some Cardio's who are not worth the money they are paid and educated in their chosen field. I had one quack cardio who took my blood pressure and said I was 500, never said what the lower number was. He did not know how to read the gauge for the blood pressure. I am so sorry you have had such trouble with doctor's. I hope you are keeping your heart condition checked.
 

Eva

Miracle Believer
Joined
Aug 8, 2008
Messages
4,097
Location
Redondo Beach, CA
The first doc said I had severe Stenosis os the aortic valve, he said it would need to be replaced in a year, maybe 5 or 10 or maybe never?
He retired, his partner reevaluated me and said the stennosis is mild at best and my heart is in great shape.
I had the stress test tread mill test with the ultra sound , the second Doc said those tests can be misleading, he said he has listened to 1000's of hearts and mine is just fine, I have no symptoms at all.
That first doc put me through a year of hell with his misdiagnoses, not to mention it made my wife a nervous wreck .
I don't sue anyone as a rule but I am seriously thinking of suing the first doc.
I had exact similar situation! I lived in hell because of the different contradicting opinion.

After about 5 years, the very first doctor that my family hated for his diagnosis proved to be most brilliant. He was the first one who detected the my undetectable heart issue!
Note: you may just need another good echo with color contrast to put your mind at ease.
Also, though my valve was severe in my thirties. I had my surgery 20+ years later.

Good luck, enjoy your life, don’t let worry overtake your good energy!
 
Last edited:

Ladybug

Active member
Joined
Jul 30, 2019
Messages
36
Did you read my post? I was asking the original poster about the doctor. I have had no problems here in America, since I was born and raised here in America. But I do agree that there are some Cardio's who are not worth the money they are paid and educated in their chosen field. I had one quack cardio who took my blood pressure and said I was 500, never said what the lower number was. He did not know how to read the gauge for the blood pressure. I am so sorry you have had such trouble with doctor's. I hope you are keeping your heart condition checked.
I’m scheduled for TAVR on Thur 9/19/19 at Emory St. Joseph’s in Atlanta. The surgeon communicates well and has done 700+ TAVR procedures. He’s personable, respectful, and answers any cock-eyed question. The prior bad luck I’ve had with doctors causes me to have post traumatic Emory disorder. The Dr that messed me up so badly practices in SC but was trained at Emory, and the device that failed was sponsored by Emory. Before I met this Emory interventional cardiologist (I now live in GA), I shook like a dog being driven to see the vet...all the way to the hospital, but felt better after I met him. We are each the sum total of our life experiences, and we are all just doing the best we know how to do.
 

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