’m looking to hear from others who have elected to proceed with valve replacement surgery when asymptomatic, and input they can offer me on getting one’s ...Read more
’m looking to hear from others who have elected to proceed with valve replacement surgery when asymptomatic, and input they can offer me on getting one’s head around the decision to proceed.
I am a 63 year old male born with sub aortic stenosis. I had open heart surgery at age 14 which was successful. I have always diligently consulted with cardiologists regarding the remaining regurgitations and how to best navigate aging with the conditions I have.
My Mayo Clinic (AZ) cardiologist and cardiac surgeon have advised that it’s time to undergo another surgery to address some long-standing issues. Specifically, the plan is undergo surgery in September to repair an aortic aneurysm, replace the Aortic valve and repair (or replace) the mitral valve. The measurements all suggest it is time to go forward, even though I am asymptomatic. The aorta is at 53 mm at the root and ascending aorta, and the aortic and mitral valves are in the moderate to severe range. Ejection Fraction is 52%, Left ventricle is enlarged (60 mm) and left atrium is also enlarged. These have been watched over the past five years and there is a general progression of these symptoms, but not catastrophically so.
The issue is I am asymptomatic. I feel great, in fact. I’m trying to get my head (and heart) around the decision to go forward while still feeling quite well. I can understand that it is better to address these issues while I am healthy, and that these issues will not spontaneously improve. I also am convinced that if I want to ensure a healthy and long life in the future, I should proceed with the surgery.
Yet, the decision to go forward with open heart surgery means a decision to go through a process that has a small but non-negligible amount of risk of death and a larger risk of some non-morbid complication (e.g. pacemaker implantation). A friend has also just recently had emergency open heart surgery to address an infected Aortic valve and he and his family are struggling with some pretty gruesome complications. It is unclear at this point whether he will survive, and if he does it will be in a significantly worse status than he was in before the surgery.
I’m hoping to hear from people with similar issues or who have navigated this process of going forward even when asymptomatic. For those of you who did so, what can you tell me about your experiences? Thanks!
John Cook I’m also asymptomatic with severe aortic regurgitation. If I hadn’t given up on trying to get my blood pressure down on my own almost exactly a year ago, I wouldn’t know I have a problem.
Adam did a Q&A video between patients and surgeons that I found on YouTube. It’s really good to watch. I’ll see if I can re-find it when I have time.
The bottom line is back in the 80s, the protocol was to always used to wait until patients became symptomatic. The survivability statistics were much lower than they are now. ... Read more
John Cook I’m also asymptomatic with severe aortic regurgitation. If I hadn’t given up on trying to get my blood pressure down on my own almost exactly a year ago, I wouldn’t know I have a problem.
Adam did a Q&A video between patients and surgeons that I found on YouTube. It’s really good to watch. I’ll see if I can re-find it when I have time.
The bottom line is back in the 80s, the protocol was to always used to wait until patients became symptomatic. The survivability statistics were much lower than they are now.
Now they recommend when the regurgitation transitions from moderate to severe regardless of if they have no symptoms. Patients are surviving the surgery better and have normal or almost normal longevity statistics.
The risks you accept by waiting is the regurgitation gets worse, your heart gets weaker, the surgery gets riskier, & the recovery takes longer.
Glenn Tremper Thanks for the response, and the perspective . . . I'll be following you on your journey.
Michael Ponzio Hi, I just had my surgery six weeks ago. I had severe aortic stenosis plus an aortic aneurysm 4.8. I ... Read more
Michael Ponzio Hi, I just had my surgery six weeks ago. I had severe aortic stenosis plus an aortic aneurysm 4.8. I was totally asymptomatic. as well. The surgical team felt it was best to do it at this time. Good luck with your decision.
Joyce Shelby Hi Glenn, I wish you the best. I was asymptomatic as well and I would have never known that my regu... Read more
Joyce Shelby Hi Glenn, I wish you the best. I was asymptomatic as well and I would have never known that my regurgitation went from moderate to severe if it were not for the echo and CT scans. I had 2 aneurysms that were stable for a long time and then they decided to grow in size. I was in disbelief when told I had to have surgery, it was devastating.
I completely agree with John because the longer you wait, the more dangerous the situation may become. You certainly don't want to have to face a dissection or your heart becoming weaker from inefficient function; there is no return from that! I felt great on the outside but inside, I was a ticking time bomb and would not have known if it wasn't for my great medical staff!
Every surgical case is different so you really can't compare yourself to others. Everyone's recovery is different, and their medical care is different. I had my first heart surgery in 2016 and I just had my 2nd this past February. Staying positive is everything. I am not saying surgery and recovery is easy but you can get through it! That is evident by all of the wonderful people, including Adam, on this site! All the best in your decision!
Susan Lynn Glenn - It's frightening to have to go through surgery, again. I can't imagine doing it twice! W ... Read more
Susan Lynn Glenn - It's frightening to have to go through surgery, again. I can't imagine doing it twice! We call people like you heart gladiators!! But, while you don't think you have symptoms, you described several medical symptoms that indicate that intervention is needed. Heart surgery is recommended only when the benefits outweigh the risks. So, while you feel good and have the opportunity to have an easier recovery and a greater probabilty of your enlarged ventricle returning to normal size, you may want to think about undergoing surgery sooner rather than later. There's one thing we do know - heart problems don't get better on their own.
None of us want to go down this road, but there's only one direction - forward. Trying to hold your condition constant is unlikely. Good luck with your decision.
Marie Myers I was asymptomatic with aortic regurgitation but I developed a 4.8 ascending aortic aneurysm and bonu ... Read more
Marie Myers I was asymptomatic with aortic regurgitation but I developed a 4.8 ascending aortic aneurysm and bonus root aneurysm. My aneurysms drove my surgery, and I did have my bicuspid valve replaced at the same time. I believe it is older thinking to wait for symptoms to appear.
Valerie Allen Be sure that the surgeon you choose is a surgeon who is known for doing repeat cardiac surgeries. My ... Read more
Valerie Allen Be sure that the surgeon you choose is a surgeon who is known for doing repeat cardiac surgeries. My only symptom was slight but growing fatigue. You will be in better shape to recover if done when you are well.
John Cook This is the video I mentioned: 6 Expert Tips For Heart Valve Patients.
https://www.Heart-Valve-Surgery.com - During this special webinar celebrating National Heart Valve Disease Awareness Day, you will learn "6 Expert Tips" for ...
El McRae Hi Glenn, I was asymptomatic too when my cardiologist told me it was time to talk to surgeons for AVR ... Read more
El McRae Hi Glenn, I was asymptomatic too when my cardiologist told me it was time to talk to surgeons for AVR. I found this site and spent about a year and a half studying, interviewing surgeons and worrying. Since I felt fine and did all my fitness activities, swimming, walking dogs everyday, yoga , even Sprint triathlons, it was really hard to make the decision to go forward. I kept thinking about the negative possibilities. My whole career was in technology so I finally just looked at my test data over time and realized the data proves its time. It’s not going to get better. And a key statement from my surgeon was “It’s riskier to do nothing, than to get fixed now”. I thought I was fine right up to surgery day. BTW, about week 14 after my surgery, I was flying in the pool (I’m a life long swimmer) and all the sudden I realized, wow, I’m faster again and my breathing is even easier. I think I thought I was totally asymptomatic because I was so used to how my body felt over years that I didn’t think I had any symptoms. So the data was right and Dr. Burke was right.
Grace Mason Also, asymptomatic with 5.0 cm aneurysm and moderate regurgitation and stenosis per echo, 6 months be ... Read more
Grace Mason Also, asymptomatic with 5.0 cm aneurysm and moderate regurgitation and stenosis per echo, 6 months before surgery. Glad I didn't wait any longer, not only because of my aneurysm, but reading my surgical report after I noted it stated my stenosis was severe. Your heart is able to adapt but studies show waiting for symptoms can hurt your heart in the long run.
Rose Madura I'm a little different in that I thought I was asymptomatic and just thought I was having some issues ... Read more
Rose Madura I'm a little different in that I thought I was asymptomatic and just thought I was having some issues due to aging. Now that I've had the surgery, I know that I was having symptoms. I actually got 4 opinions. Two were from my brother (a doctor) and his best friend (a thoracic surgeon). Those two stressed that I should have been advised for surgery well over a year prior in looking at my annual echos. It is old school to wait. The odds are much better to do it while healthier. You don't want to have an emergency like your friend.
Rita Savelis Sorry that you have to go through this. Some patients never get symptoms but their tests show they ne ... Read more
Rita Savelis Sorry that you have to go through this. Some patients never get symptoms but their tests show they need surgery. There is no perfect answer - you need to trust a surgeon with some experience. I remember getting all my tests done and being "ready" for surgery if it needed to happen. Then it was my decision when I wanted to schedule it.
Pamela Gregory The experts know what they are doing to give you the best quality of life. You do not want the aneur... Read more
Pamela Gregory The experts know what they are doing to give you the best quality of life. You do not want the aneurysm to have fatal consequences. I also did not have any symptoms. Just thought I was getting older but nothing really bad. I get what you mean though! Walking in voluntarily feeling pretty good for this surgery is HARD. We know , thankfully, that because of our expert surgeons we can be fixed and they know through experience of others the best timing I believe something like 98% of this kind of heart surgery have very good outcomes. That is pretty good. I have some kidney issues since my surgery but I feel good and if you don't have the surgery the outcome is not good. You will do fine
John Cook One more video, I watched last night. It’s more geared for aortic stenosis and mitral prolapse, bu ... Read more
John Cook One more video, I watched last night. It’s more geared for aortic stenosis and mitral prolapse, but it goes in depth on the statistics on why it’s much better to have valve surgery while asymptomatic.
https://www.Heart-Valve-Surgery.com - During this special webinar, you will learn "5 Warning Signs" that you may need heart valve surgery. The featured speak...
Yumiko Ishida Have you looked for a second opinion from a cardiologist outside of Mayo? My mitral valve stenosis wa ... Read more
Yumiko Ishida Have you looked for a second opinion from a cardiologist outside of Mayo? My mitral valve stenosis was asymptomatic for the most past before I decided to go ahead and get it replaced, and the opinion was split between the 6 cardiologist, 2 surgeons, 2 electrophysiologist, and 1 neurologist I consulted. My hematologist didn’t have an opinion, but in general the opinions of the practicing doctors in Arizona were split between Banner camp and Honor Health camp. For me, the opinions of retired cardiologists, out of state cardiologist, and Barrow neurologist were very helpful, because they were able to look at the bigger picture and assess my needs, not just what services they could offer. When you do seek opinions, make sure you ask WHY they are suggesting one path over another. What is the prognosis if you do not have surgery - gradual decline or is there a high chance of it becoming an emergency? The surgery is a risk, but so is no surgery for most of us on this site, and each of us have different kinds of risk. Hope you find the right path for you!
Glenn Tremper Thank you all so much for all of your comments. This really helps, and makes me glad I found this co ... Read more
Glenn Tremper Thank you all so much for all of your comments. This really helps, and makes me glad I found this community. I will keep everyone posted. Best of luck to all who are recovering and all who are waiting for surgery. . .
susan harris where you go and your choice of surgeon matters for outcomes! do research on this site, find large t ... Read more
susan harris where you go and your choice of surgeon matters for outcomes! do research on this site, find large teaching hospitals, many on this site traveled far distances for a surgeon (consults can be done virtually). interview surgeons til you feel comfortable!
I am a 63 year old male born with sub aortic stenosis. I had open heart surgery at age 14 which was successful. I have always diligently consulted with cardiologists regarding the remaining regurgitations and how to best navigate aging with the conditions I have.
My Mayo Clinic (AZ) cardiologist and cardiac surgeon have advised that it’s time to undergo another surgery to address some long-standing issues. Specifically, the plan is undergo surgery in September to repair an aortic aneurysm, replace the Aortic valve and repair (or replace) the mitral valve. The measurements all suggest it is time to go forward, even though I am asymptomatic. The aorta is at 53 mm at the root and ascending aorta, and the aortic and mitral valves are in the moderate to severe range. Ejection Fraction is 52%, Left ventricle is enlarged (60 mm) and left atrium is also enlarged. These have been watched over the past five years and there is a general progression of these symptoms, but not catastrophically so.
The issue is I am asymptomatic. I feel great, in fact. I’m trying to get my head (and heart) around the decision to go forward while still feeling quite well. I can understand that it is better to address these issues while I am healthy, and that these issues will not spontaneously improve. I also am convinced that if I want to ensure a healthy and long life in the future, I should proceed with the surgery.
Yet, the decision to go forward with open heart surgery means a decision to go through a process that has a small but non-negligible amount of risk of death and a larger risk of some non-morbid complication (e.g. pacemaker implantation). A friend has also just recently had emergency open heart surgery to address an infected Aortic valve and he and his family are struggling with some pretty gruesome complications. It is unclear at this point whether he will survive, and if he does it will be in a significantly worse status than he was in before the surgery.
I’m hoping to hear from people with similar issues or who have navigated this process of going forward even when asymptomatic. For those of you who did so, what can you tell me about your experiences? Thanks!
Adam did a Q&A video between patients and surgeons that I found on YouTube. It’s really good to watch. I’ll see if I can re-find it when I have time.
The bottom line is back in the 80s, the protocol was to always used to wait until patients became symptomatic. The survivability statistics were much lower than they are now.
... Read more
Adam did a Q&A video between patients and surgeons that I found on YouTube. It’s really good to watch. I’ll see if I can re-find it when I have time.
The bottom line is back in the 80s, the protocol was to always used to wait until patients became symptomatic. The survivability statistics were much lower than they are now.
Now they recommend when the regurgitation transitions from moderate to severe regardless of if they have no symptoms. Patients are surviving the surgery better and have normal or almost normal longevity statistics.
The risks you accept by waiting is the regurgitation gets worse, your heart gets weaker, the surgery gets riskier, & the recovery takes longer.
I completely agree with John because the longer you wait, the more dangerous the situation may become. You certainly don't want to have to face a dissection or your heart becoming weaker from inefficient function; there is no return from that! I felt great on the outside but inside, I was a ticking time bomb and would not have known if it wasn't for my great medical staff!
Every surgical case is different so you really can't compare yourself to others. Everyone's recovery is different, and their medical care is different. I had my first heart surgery in 2016 and I just had my 2nd this past February. Staying positive is everything. I am not saying surgery and recovery is easy but you can get through it! That is evident by all of the wonderful people, including Adam, on this site! All the best in your decision!
But, while you don't think you have symptoms, you described several medical symptoms that indicate that intervention is needed. Heart surgery is recommended only when the benefits outweigh the risks. So, while you feel good and have the opportunity to have an easier recovery and a greater probabilty of your enlarged ventricle returning to normal size, you may want to think about undergoing surgery sooner rather than later. There's one thing we do know - heart problems don't get better on their own.
None of us want to go down this road, but there's only one direction - forward. Trying to hold your condition constant is unlikely. Good luck with your decision.
Read more
https://youtu.be/3aryTW5PkJY?si=l408T-TU9tLS6CFs">https://youtu.be/3aryTW5PkJY?si=l408T-TU9tLS6CFs
My whole career was in technology so I finally just looked at my test data over time and realized the data proves its time. It’s not going to get better. And a key statement from my surgeon was “It’s riskier to do nothing, than to get fixed now”. I thought I was fine right up to surgery day. BTW, about week 14 after my surgery, I was flying in the pool (I’m a life long swimmer) and all the sudden I realized, wow, I’m faster again and my breathing is even easier. I think I thought I was totally asymptomatic because I was so used to how my body felt over years that I didn’t think I had any symptoms. So the data was right and Dr. Burke was right.
Your heart is able to adapt but studies show waiting for symptoms can hurt your heart in the long run.
https://youtu.be/TuJ8-Brznvs?si=6lLMGDbFGo8bE0NH">https://youtu.be/TuJ8-Brznvs?si=6lLMGDbFGo8bE0NH