Charles's Journal

Rose Madura  Charles, it's always a good thing to have two opinions. To wait for symptoms is old school thinking from what I've been told. I would actually consider getting a third opinion (I actually got 4 and they all agreed - so easy decision for me).  But if your stenosis is severe, why wait?  My two cents.

Yumiko Ishida  I officially saw two surgeons, three cardiologists, and two electrophysiologist. Also informally consulted two retired cardiologists and an out of town cardiologist. It was confusing at first but it helped me decide what to do. When you are asymptomatic, you have to make a lot of decisions yourself. There are a lot of trade offs, so I found the multiple consultations helpful in finding the choices that were right for me. May you find the right path for you!

Rebecca J  Charles I am 65 and was asymptomatic with severe regurgitation when my valve problems were discovered.

My cardiologist and some of the surgeons I interviewed (total 4) did not agree on the urgency or the approach. Like you, I wanted to make an informed decision. I watched all the video interviews Adam Pick created for us, as well as others, and learned about the heart. Surgeons and cardiologists have different approaches and ability. The amount of surgeries they perform annually makes an incredible difference on outcomes, and if they are up-to-date with the newest research and technologies. A real expert valve surgeon performs over 100 valve repairs on patients with your type of valve.

As I was asymptomatic I was especially concerned about:
1) not damaging my heart tissue,
2) being healthy and prepared as possible pre-surgery to be strong for surgery recovery and,
3) having as short of a recovery period as possible.
This focus lead me to research the different types of approaches/procedures for the surgery; the ERAS society, and surgeons who follow rapid recovery protocols.

I scheduled a surgery early on to have something on the books while I was researching, knowing I could cancel if I found a different surgeon and approach that would improve my outcome.

I went on a hunt to find a surgeon who was an expert and utilizes the rapid recovery protocol. I had decided I wanted to have the surgery prior to having visible-to-me symptoms and creating heart muscle damage beyond the valve problem. I did find that surgeon and cancelled the initial surgery, because I felt confident in my decision. I had a successful Mitral Valve repair 9 days ago. Recovery is going well, everyone in my sphere is shocked at how well I'm doing with movement, mobility and energy. It's early days and I have a lot of recovery yet to do and I'm so glad those initial surgical opinions differed so I could dig in and get informed.

You're doing your homework, decide what's most important to you regarding your valve repair and keep researching and getting additional opinions until you feel comfortable with your decision.

We are among the asymptomatic fortunate.

Charles Rayl  Thank you Rebecca. Some great thoughts. Like you I don’t want to wait too long to do something about my valve problem but it’s hard to take that next step when I feel so good right now. Think I will continue to research and ask more questions until I have all the information I need. Good luck with your recovery. Sounds like you are doing great which is encouraging!

J Alexander Lassally  Hey - Just want to challenge you to embrace the second opinion confusion and get to the bottom of the truth. Be a consumer! Get a third or fourth opinion and then feel good about the insight ! 

  I gathered about 6-7 consults before picking surgeon, place and method. It is your life. 

Ana K  I agree, it was confusing for me too. I met with 2 surgeons and they suggested very different procedures. 
I still think it’s good to get a second or even third opinion. After all it’s heart surgery, not a haircut.  

Robert Miller  Always get a second opinion for something like that. And in your case maybe a third opinion. Also do your own research with the numbers you were given. Waiting for symptoms isn't a good recommendation when you are in the "severe" area. Just my opinion. Doing surgery might be an issue if you have other underlying health issue which can make surgery more risky. Maybe this played a role in the other opinion about waiting. 

Marie Myers  I believe the docs go by the numbers from the various studies that you will have done. Some of the tests include echocardiogram, trans esophageal echocardiogram, and cardiac catheterization. The risks to your life increase as the numbers get into the “severe” range. Sometimes we don’t identify feelings we have as symptoms because they come on gradually and we attribute them to aging or being out of shape. We just get used to things as they become. I didn’t feel i had symptoms from my aortic regurgitation and expanding aneurysms, but i did notice that after i was fully recovered, i had much less irregular heart beats than I did before the surgery. Hope that helps!

Marie Myers  I have also read that when severe symptoms develop such as chest pain, shortness of breath, fainting,  ect that death can occur in 1-2 years..

Rose Madura  I definitely would not wait  for "at some point". I would get a second opinion.  It's hard to wrap your head around OHS but a second opinion can help ease your mind. You don't want to wait until you start having symptoms.

Thomas Sperounis  Hi Charles! I was diagnosed with BiCuspid Aortic valve in July of 2019. Since then I have been monitored very closely by my Cardiac team with frequent Echos and Stress tests.Although I have not had any symptoms during this time. My frequent test results thru the past few years showed steady progression,and aortic stenosis thru these five years and will be having Aortic Valve Replacement on Feb 21st 2024 in Boston. I do have a few tips for you my friend.

1. purchase the book available on this website! It has given me a wealth of info in a consolidated easy form that I refer to all the time.
2. Continue to engage here in the community.
3.Monitor your condition personally. Know what to look out for during test results, ask questions and be informed! Don’t miss any medical tests and appts.
4. ABOVE ALL- AND THIS IS THE MOST IMPORTANT I BELIEVE- Have a terrific attitude about the whole thing!!! Love Yourself! Be prepared and take all those bumps and hiccups that are included in this ride.( oh yes ,they are included😆) After a minor why me bad attitude, I figured this was not helping matters at all and chose to give it the best attitude I got- THIS WILL HELP YOU. Any questions fire away!

Yumiko Ishida  I suggest you research possible related conditions. My mitral valve stenosis was mild for more than 30 years, but in the meantime it caused my left atrium to enlarge, which in turn lead to afib, clot, and stroke. What propelled me to get my valve replaced was all the other related conditions. The valve itself was borderline moderate / severe and I was asymptomatic. So if it’s just your valve and you’re asymptomatic, you probably can wait, but if there are other related conditions, you may not want to wait too much.

Mark Wilbur  Charles, the hardest part of this process is the waiting, the not knowing, the uncertainty of the who, the what and the when.  And, when you think you have it all figured out... maybe you do, or maybe not.  

The decision of when to replace the valve is somewhat different for everyone, but your cardiologist is your guide and Medicare or other insurance have their threshold standards for payment.  You hear the term "severe" and it's natural to think the remedy should be immediate, but, sometimes it's years away.  You're welcome to read my experiences on the "my story" section of my page here and, hopefully, that can help you. 

There is an amazing amount of information on this website and in Adam Pick's book.  It was a Godsend for me.  The more information you have the more you will understand the process before, during and after surgery.  Always remember, it is your body, your life and there are no stupid questions for the doctors or for those who post on this blog.  Good luck and God Bless... and know that good results are ahead!

Charles Rayl  Thank you all for your comments. Very helpful and have already scheduled a second opinion from a different group. Being asymptomatic and severe at the same time is a strange place to be. Time to learn more and I especially like the comment that I might not realize how much things have changed since it is such a slow progression. Thanks again and let me know if you think of anything else!

Nancy Bukowski  Hi Charles, I have read some articles that indicate that there are benefits to having surgery prior to getting symptoms.  Will try to locate those articles again and send to you.  I am where you are at- severe stenosis and asymptomatic.  Because of the severity of my stenosis, I have decided to proceed with surgery.  Did you have a stress test recently?  

Yumiko Ishida  Your valve is not going to get better on its own, it’s only going to get worse. You don’t want it to become an emergency. The more fit you are before the surgery it’ll be easier during recovery. Also it is nice to be able to schedule it when it less inconvenient. That being said, I would not jump into it if none of your doctors think it is the right time. For myself, one doctor said ASAP and the rest were split between “sooner the better” and “wait until symptomatic.”

Charles Rayl  I had a stress test in addition to the original echo and it was good. Currently asymptomatic and wondering if there are other tests that might help me decide whether it is time to do something about my aortic valve problem?

Rose Madura  The echo was the deciding factor for me because the numbers don't lie.  I was pretty much asymptomatic or at least I thought I was. I chalked up my SOB to getting older.  That wasn't the case. Have you gotten your second opinion yet?

Charles Rayl  Getting a second opinion next week. If there is any doubt I will probably move forward with treatment. Don’t like the uncertainty and realize I will have to do it some day anyway.