What to do when cardiac surgeons disagree?

Posted by inali @inali, Feb 5, 2020

My dilemma is this: I have 3 of 4 heart valves that are not performing well. After three years of seeing specialist after specialist and having many tests, it is a bit of a relief to finally know the cause of my debilitating symptoms. I learned more after my first echocardiogram at Mayo in October than in the dozens of other tests I endured over the previous several years. So we now know what’s wrong. We even know the cause: radiation to the chest to treat cancer over 40 years ago. I can’t whine too much about that. The cancer was cured and I got (so far) 40 years of life I otherwise would not have had. The challenge now is determining the treatment. The two surgeons I’ve met with agree that surgical intervention is necessary, but they don’t agree on the details. They do agree that I’m not a candidate for the less invasive TAVR procedure. Apparently the extent of radiation damage is important to assess and won’t be apparent until they get eyes on the heart. One wants to focus on the aortic valve - the one in the worst shape and the cause of my most quality of life destroying symptoms- and take on the others later. The other wants to do all three at once. I don’t know what to do. Any recommendations? Anyone else face this kind of choice?

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lioness | @lioness | Feb 6, 2020

@imali Welcome to connect . We aren't Dr.s but try to help with what we can. In 1996 I had a triple by pass due to cholesterol it was necessary to have this done to all 3 arteries but have not had your dilemma Ask yourselve if I only have the one done then later on will I have to have this procedure done all over again ? Do I want to put my body through this again. Or just have them all done at once? But Im sure you have . Good luck with your decision . You and the Dr are the only one who can decide .

inali | @inali | Feb 7, 2020

In reply to @lioness "@imali Welcome to connect . We aren't Dr.s but try to help with what we can...." + (show)

Thank you for your response. There is no doubt that, should I survive having one done, the other two will continue to get worse. The idea of going through open heart surgery a second time is not appealing. Congrats to you for your successful triple bypass experience. I hope your quality of life was much improved by it.

lioness | @lioness | Feb 7, 2020

@inali Thank you I praise my God for letting me still be here

penn1023 | @penn1023 | Feb 13, 2020

let us know your decision. I don’t know your age but can your body handle more than one operation? God bless you inali .

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 13, 2020

Hello @inali,

Heart valve disorders can include double (mitral-aortic, mitral-tricuspid), or triple (mitral, aortic, and tricuspid) valvular regurgitation. Combined mitral valve repair (MVR) and aortic valve repair (AVR) is performed most often among multiple valve operations, followed by MVR and tricuspid valve repair. Here are published research articles which, I hope, will help you find some answers:

– https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752762/
– https://www.sciencedirect.com/science/article/pii/S1743919117305095
– https://www.ncbi.nlm.nih.gov/books/NBK154635/

I’d also encourage you to view these discussions where @carlysmith011 @yorlik @maryd @colleen00 @yoanne and others have shared their insights about valve disease and treatment:
– Triple valve replacement?? https://connect.mayoclinic.org/discussion/triple-valve-replacement/
– Valve Disease https://connect.mayoclinic.org/discussion/valve-disease/

@inali, may I ask if you are consulting with doctors at Mayo Clinic? If not, would you consider returning for a second opinion?

inali | @inali | Feb 13, 2020

In reply to @penn1023 "let us know your decision. I don’t know your age but can your body handle more..." + (show)

I’m 69. I don’t know that my body will even handle a single operation 😊 But I get your point: a second surgery will certainly be much more of a stress on my body now than when I was younger. Not to mention the recovery time...

inali | @inali | Feb 13, 2020

In reply to @kanaazpereira "Hello @inali, Heart valve disorders can include double (mitral-aortic, mitral-tricuspid), or triple (mitral, aortic, and tricuspid)..." + (show)

Thank you for these links. It is disconcerting to read these grim percentages, but I’d rather be informed than not. And yes, I will be returning to Mayo next month for preoperative consultation. I anticipate more concrete information at that time. Meanwhile, I’ll keep reading and worrying.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 18, 2020

In reply to @inali "Thank you for these links. It is disconcerting to read these grim percentages, but I’d rather..." + (show)

Hi @inali,

I’m glad to know that you will be getting more expert opinion at Mayo Clinic. Until then, try not to worry too much because worrying never provides a productive solution. Instead, keep talking and asking questions of your fellow Connect members, to help put your worries in perspective––and so that you can make informed decisions about your health. Wishing you all success.

inali | @inali | Feb 18, 2020

In reply to @kanaazpereira "Hi @inali, I’m glad to know that you will be getting more expert opinion at Mayo..." + (show)

Thank you for your kind words. I definitely have groups of hours where I feel no fear or anxiety about my health. The panic creeps into my dreams, and is hand in hand with me as I read articles and research studies that describe the many potential negative outcomes of various treatment options. I’m trying to practice meditation and journaling in an effort to calm my stress. I recognize that my odds for good surgical outcomes can be improved by a positive attitude. I’m working on it, and I really appreciate the support I’ve received from Connect members.

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