Different opinions from Cardiologists

[Patsman07]

Hi all,
I'm a 28 year old male from Ireland. I was diagnosed with a leaking aortic valve about five years ago and I was told at the time by my cardiologist that I would need an operation in the future and that I was on the borderline of needing an operation. For the past five years I've been getting echo's every six months combined with a visit with the cardiologist. I've never had any symptoms and i've lived a very active life, playing a lot of Gaelic football (bad-mad a fellow member was also a gaelic footballer.)

My diagnosis never cost me a thought until my last check up when I was referred for surgery. I subsequently met the surgeon and became a bit scared about the whole thing although I know the risks to someone of my age are very low. To get some reassurance I arranged for a second opinion with a different cardiologist and surprisingly he told me that from my records my heart hadnt changed much in the past 5 years and he said that there was no need to go for surgery just yet and I could potentially go for another 5-10 years before I would need AVR. I went back to my original cardiologist and when I put this to her she just said she disagreed with this.

I've done some research and I must admit the more I learn the more fearful I get, especially with regards to post-op complications and the restrictions of warfarin etc-I feel like I want to just bury my head in the sand.

My end diastolic is 6.6 and my aortir root is enlarged-but I won't know if this needs to be replaced untill surgery. I was also told that my end diastolic volume is 270cc with 50cc being leaked with each beat. The size of my heart is my original (female) cardiologist's cause of concern but the male cardiologist who I went to for the second opinion said that this could be due to all the training I have been doing for football.

Sorry for the length of the post but basically I don't know what to do next.
Any advice would be greatly appreciated.
Many thanks,
patsman.

 

[ski girl]

How do you feel? I ran from several cardiologists (one when I was 19, one when I was 28) because they gave me doom and gloom while I felt fine. When I was 39 I finally felt the signs that something was wrong. I think those of us who push ourselves with exercise know when it's time. If you feel good, it's not time.

However, I'm not a cardiologist so take my advice with a pinch of salt.

Don't be afraid of the op though, us fit people get through it just fine! But if you don't need it yet, keep on keepin on.

 

[Patsman07]

Thanks ski girl.

I feel fine although since meeting the surgeon i've become very paranoid about the whole thing and I think I can feel a tightness in the left side of my chest that I never felt before- but thats probably the paranoia more than anything else!

Both Cardiologists and the surgeon all said to keep playing football & training and despite this Im still worrying about the aortic root!!!

The Cardiologist told me that operating before I become symptomatic will result in a better outcome.

 

[Guyswell]

For what it's worth..

I'm one who waited until the symptoms were unmistakeable. By then, I had developed a left bundle branch block (permanent electrical problem) that was probably caused by the calcium deposits pushing out into the surrounding muscle. It's always a tough call to know when it's time for surgery. As the heart enlarges to compensate for the added strain of insufficiency or regurgitation, permanent damage can occur. Some cardiologists are more cautious than others about intervening. Everyone's situation is different. I was not as active as you are and I may have noticed symptoms sooner if I had been. You might consider sending your medical records and test results to a high-volume heart center in the U.S. for another opinion. The Cleveland Clinic (and others) offer a second opinion service.

 

[AmyR]

Hello Patsman,

I am from India. i am a little younger being 24 y/o male. I am going through a very similar situation. I have now concluded to go with a surgery. I am a Basketball player and also love the Gym. I love to lift. I was diagnosed due to sudden palpitations while heavy lifting. That's my only symptom. The tightness is jus the panic. But it is also true that it is better to go for a surgery before the heart walls expand and get damaged. AVR is not such a bad thing as u consider it to be. Read peoples post here. We have some really amazing people here who have shared there exp. The only worry is that you have to avoid bad injuries and head injuries post surgery. Nothing else. Which i feel is not so bad. The funny part is cardiologists always go by the theoretical numbers whereas surgeons go with what they see. What does the surgeon say? If possible take a second opinion from a surgeon. Keep us informed. Take care and don't panic too much.

 

[iheart]

Patsman,

Sorry to hear about your situation. My advice is to get another opinion (or two) from the best cardiologists you can find in Ireland or elsewhere. None of us on this forum are cardiologists.

You're in a tough situation; of course you don't want to go in for surgery too early when you may have 5 to 10 years left before your valve needs replaced. But, you don't want to wait too long and cause permanent damage to your heart. Get another opinion. I agree with Guyswell, if you can contact a facility like the Cleveland Clinic, do it. Records and echos can be sent via CD.

For what it's worth, one of my doctors told me the trend with cardiologists these days is to push for surgery just a little bit earlier than in the past, and that could possibly explain the disagreement between your cardiologists. I think the reasoning is, surgery is so much more of a sure thing these days, and having it earlier will save the heart from damage.

In the meantime, if BOTH doctors have told you it's OK to keep playing football, that's a good sign. Being in good shape, you have a lot going for you. I know it's hard not to be overwhelmed about the situation you are in, but remember, even if you do need the surgery someone young and healthy like you would do fine. A lot of old geezers get this surgery everyday with no problems. Modern heart surgery is simply amazing, and I should know, I've just been through it. We are pulling for you, good luck!


Ron

 

[tom in MO]

I can't say about when surgery may be due for you, but I thought I was asymptomatic, until after surgery, when I realized I had been kidding myself. I had a lot more stamina 8weeks after surgery than i had before. my cardio gave me 6 months to have the surgery, or I may experience the syndrome known as sudden death. My surgeon said a year. I had it 2 months later. After, the surgeon said my valve was "in bad shape" and it was definitely time to yank it out.

As to after surgery, warfarin won' t keep you from doing Gaelic football at all. Not to be too negative, but without the surgery, football could be the end of you. You need to make sure you see a cardiologist who has a subspecialty in sports medicine for a third opinion, unless you believe one of the current two cardiologists are not competent.

 

[AZ Don]

Hi,
It seems that you have two issues: a leaking aortic valve and an enlarged aortic root. With two such issues, often one is fixed at the same time as the other. Generally valve problems are not fixed until there are symptoms or the numbers on the echo show clear degeneration. Still, I've seen stories on this board of people that had bad numbers, didn't get it fixed because they felt fine, and then subsequent tests showed the numbers were better. With an enlarged aortic root, the general criteria is to have this surgically repaired when it reaches 5.5 cm. 5.0 cm or less if you have other complications (bicuspid valve, Marfan's syndrome, etc). While this is the general guidance some Dr's are more aggressive and the recommendation could be lower depending on your specific situation. For an aortic aneurysm, you do not wait for symptoms - the first symptom is generally a rupture or dissection. I don't know as much about valve issues, but have done a lot of research on aneurysm's, and you should know that a study found physical stress to be associated with 27% of aneurysm ruptures, while emotional stress was associated with as many as 40%. The larger the aneurysm the larger the risk, but clearly competitive sport can increase your risk. I wrote a post about this with links to additional info:
http://www.valvereplacement.org/forums/showthread.php?41543-Exercise-and-stress-with-Aortic-Aneurysm

The problem with 2nd, 3rd, etc opinions is that sometimes the Dr's all disagree to some extent, and then it can become a matter of who is saying what you want to hear. Still, it may be worth getting another from a top local specialist or sending your test results to the Cleveland Clinic. It is also helpful to educate yourself as much as you can about your conditions. Ultimately it is you who are responsible for your own health.

 

[Tirone]

Hi Patsman

I'm in a very similar situation: Same age and very active until I was diagnosed with a severely leaking BAV 5 months ago. I'm also confronted with different opinions from cardiac surgeons about when to operate and how. I guess that's the downside of second opinions... However, I trust both of these surgeons and after days of reading the literature I came to the conclusion that there just isn't enough data / studies yet to make a clear evidence-based decision. Both of them are "right". Since I had to make a decision and I will have to life with the consequences I chose the surgeon I had the best feeling with. This seems right for me.

My recommendation is to first get as much information as possible about your condition, treatment options, the cardiologist, and the hospital. Afterwards listen to your gut.

 

[Patsman07]

Many thanks for all your posts.

Its re-assuring to hear from people who have had the same sort of experiences as I am having now.

Guyswell and Az, thanks I might well take your advice regarding the Cleveland clinic. (If I can afford it.)

In the meantime I am currently down for surgery in October/November so I will stay on that list. I am currently leaning towards getting the surgery done sooner rather and later just to get it over and done with.

Many thanks to you all!

 

[hannahsmom]

Patsman07

I agree with getting another opinion. My daughter is a patient at the Cleveland Clinic and her cardiologist suggested it was time based on echo and ekg's along. Hannah was feeling fine and had no symptoms. Her dr provided her records to three other doctors at the Clinic as well as two surgeons at other facilities. They stated we had some time to play with but it should be done sooner or later. I promptly scheduled and she went in for her replacement a month later. Her surgeon stated that while in sugery he found that more damage had been done that what could be seen on any of the routine or pre-op testing. Luckily it was caught in time and damage was reversible and she absolutely has more energy than she has ever had. I guess the main conclusion to the story is your body adapts to how it feels. The symptoms may not be apparent to you, but that does not mean they aren't there.

Also just some uplifting information for a young patient: She is a very active kid - swims, dances, cheerleader, and runs just to stay active on her off days. Her surgery has does nothing but better her life. We feel grateful every day that there are procedures and doctors out there that make her living a VERY normal life possible. Keep your head up!

 

[Lederman40]

Here is my story. Bicuspid valve found at birth. Monitored my whole life. Never felt a thing. Went in to normal checkup 10/1/13 and found aneurysm. Cardiologist sent me to the surgeon. After that, I visited a second cardiologist with my tests.

My cardiologist: We need to do something by the end of the year
My surgeon: Let's do it now
Second cardiologist: Could go for another 2-3 years possibly, but being young(33) and catching it before it escalates any further, you will bounce back in no time. So you can wait, but why wait?

I had surgery 6 weeks later. I'm just barely past the 6 month mark, and I already feel better than I ever have in my life. I never once felt a "symptom", but hindsight shows me I felt the symptoms all day every day and just didn't know it. I run, lift weights, play golf, wrestle with my kids, and do everything I want to do. The mental recovery takes a bit longer, but I'm on my way. Good luck to you!

 

[carolinemc]

It sounds like with the size of the heart, it is enlarged due to the leaky aortic valve. Mine did not enlarge till the aortic valve was closed off from the leaky valve. I then had what became heart failure. It made me tire easily, breathing hard from not much excertion, less sleep at night. I often wonder now how I made it work till it was time for surgery. For cleaning my apartment, it would take the whole weekend to clean the floors, bathroom, and vaccum the carpet. And I am female with a male cardio from India, who helped me get better after surgery and since. And your activity did not cause the aortic valve to leak. It probably has been there, just now getting caught. Good luck in whatever you do to feel better. And when you go for other opinions, there will always differing of opinions of what you condition is. We all here have been through that many times. Take care and keep coming in and keep us updated on what you find out and if you do go with surgery. Hugs for you today.