Hello all,
I will be 63 yo this year and I had a valve sparing ascending aortic aneurysm repair almost 20 years ago (2 months shy). I am scheduled for open heart surgery on May 26 for aortic valve replacement due to severe aortic stenosis, and yes, I do have a bicuspid aortic valve. I am returning to the same institution that did my initial procedure. In fact, the surgeon I am using sat in on my initial aortic repair so he has already seen under the hood, so to speak.
Twenty years ago when I had my aorta replaced with Dacron I opted for the valve sparing approach. To be honest, I believe I was so stressed about the aneurysm (5.5-6.0cm) that I did not give as much thought regarding valve selection at the time. At the time they only had seven years of data showing the success rates of the valve sparing approach. The surgeon said "I can quote 7 years success but it could possibly go for 10, 15 years or perhaps your lifetime". I also asked a few additional cardiologists and primary care physicians their opinions regarding mechanical valve vs. valve sparing. For the most part they all liked the idea of valve sparing and felt that cardiology was continuing to improve and in the future years there could be less invasive approaches to a new valve if needed. They were correct.
At this time I have no regrets with my initial approach taking the path of repairing and utilizing my native valve when I had the aneurysm repaired. Twenty years was somewhat remarkable. However, given the condition of my stenotic valve, my age and my health goals we are requesting a bio valve for my upcoming redo and its going to be open heart surgery again. Only if, and I stressed this point with my surgeon, there is enough room for a good size bio valve that can manage a valve-in-valve replacement via TAVR in the future if required. I requested that if there were any doubts about future valves via TAVR then proceed with mechanical. My surgeon actually mentioned the goal of placing a valve large enough for ViV and the possibility of ViV a second time. That possibility was news to me.
So how did I get here? I have been having yearly echos for 20 years. We watched the stenosis and gradient across the valve increase to the point of cross-over into severe late November of 2022. For the most part I did not have any symptoms at that time. Day to day activities were not impeded in any way but I did feel a unique heaviness in my legs and arms about 10-15 minutes into a routine workout on elliptical machine starting prior to November echo results. It would last less than a minute and I could complete my exercise and then jump on the stationary bike and then on to weight training. I was never tired per say, no chest pains nor did I become dizzy. The surgeon and primary care physicians were all recommending a watch and wait on a three month basis. My cardiologist on the other hand felt like I should not wait. As many of you have mentioned and quoted papers on, the earlier the surgery in the severe stenosis stage the better the outcomes. So the next steps were to conduct a stress echo for added information and guidance on when I should have surgery. The stress echo showed no damage to the heart wall muscle and mild LV hypertrophy which I have had for many years. During the stress echo I did experience a normal increase in bp and then a sudden drop right around the 10 minute mark. This was probably what I had been feeling during my normal workout and contributing to the short period of "heaviness". That was the first "ahah" moment that I was looking for in order to push me along to surgery sooner. The second "ahah" moment was during my annual physical my labs came back mildly anemic. I researched anemia along with stenosis (I'm still searching for the publication to share with you all) and if memory serves me, the publication mentioned that approximately 40% of the time aortic stenosis will cause some for of anemia but they can't explain why. At this point I scheduled the surgery.
I also had a 36 gene panel focused on genetic mutations related to aortic aneurysms and connective tissue abnormalities. Surprisingly they all came back negative. I say surprisingly because I had conflicting data from an earlier study about 15 years ago that was probably not as robust and did not have all the fully validated genetic mutations available at that time. This new information did very little for my decision but it does help with managing sibling expectations and downstream management of the offspring of my children. If I had been positive this would have been a third "ahah" moment for me driving me to surgery sooner rather than later.
So to summarize for others with bicuspid valves with or without aortic aneurysms, you may want to consider the following:
1. Yearly echos
2. Stress echo once you approach the severe stenosis stage
3. If there is any sign of a moderate aneurysm, have everything replaced at once if feasible. You can still take a decision regarding mechanical, bio, or just repair regardless.
3. Genetic testing just for extra information that may help guide you and your decisions plus provide family risk data
4. Obvious, but capture multiple opinions regarding the surgical approach. My two surgeons had significant differences to their approach.
I will include and edit my post with a few publications that were useful for me once I can track them down. I want to thank everyone on this forum for their generous offering of useful information. See you on the other side of surgery.
I will be 63 yo this year and I had a valve sparing ascending aortic aneurysm repair almost 20 years ago (2 months shy). I am scheduled for open heart surgery on May 26 for aortic valve replacement due to severe aortic stenosis, and yes, I do have a bicuspid aortic valve. I am returning to the same institution that did my initial procedure. In fact, the surgeon I am using sat in on my initial aortic repair so he has already seen under the hood, so to speak.
Twenty years ago when I had my aorta replaced with Dacron I opted for the valve sparing approach. To be honest, I believe I was so stressed about the aneurysm (5.5-6.0cm) that I did not give as much thought regarding valve selection at the time. At the time they only had seven years of data showing the success rates of the valve sparing approach. The surgeon said "I can quote 7 years success but it could possibly go for 10, 15 years or perhaps your lifetime". I also asked a few additional cardiologists and primary care physicians their opinions regarding mechanical valve vs. valve sparing. For the most part they all liked the idea of valve sparing and felt that cardiology was continuing to improve and in the future years there could be less invasive approaches to a new valve if needed. They were correct.
At this time I have no regrets with my initial approach taking the path of repairing and utilizing my native valve when I had the aneurysm repaired. Twenty years was somewhat remarkable. However, given the condition of my stenotic valve, my age and my health goals we are requesting a bio valve for my upcoming redo and its going to be open heart surgery again. Only if, and I stressed this point with my surgeon, there is enough room for a good size bio valve that can manage a valve-in-valve replacement via TAVR in the future if required. I requested that if there were any doubts about future valves via TAVR then proceed with mechanical. My surgeon actually mentioned the goal of placing a valve large enough for ViV and the possibility of ViV a second time. That possibility was news to me.
So how did I get here? I have been having yearly echos for 20 years. We watched the stenosis and gradient across the valve increase to the point of cross-over into severe late November of 2022. For the most part I did not have any symptoms at that time. Day to day activities were not impeded in any way but I did feel a unique heaviness in my legs and arms about 10-15 minutes into a routine workout on elliptical machine starting prior to November echo results. It would last less than a minute and I could complete my exercise and then jump on the stationary bike and then on to weight training. I was never tired per say, no chest pains nor did I become dizzy. The surgeon and primary care physicians were all recommending a watch and wait on a three month basis. My cardiologist on the other hand felt like I should not wait. As many of you have mentioned and quoted papers on, the earlier the surgery in the severe stenosis stage the better the outcomes. So the next steps were to conduct a stress echo for added information and guidance on when I should have surgery. The stress echo showed no damage to the heart wall muscle and mild LV hypertrophy which I have had for many years. During the stress echo I did experience a normal increase in bp and then a sudden drop right around the 10 minute mark. This was probably what I had been feeling during my normal workout and contributing to the short period of "heaviness". That was the first "ahah" moment that I was looking for in order to push me along to surgery sooner. The second "ahah" moment was during my annual physical my labs came back mildly anemic. I researched anemia along with stenosis (I'm still searching for the publication to share with you all) and if memory serves me, the publication mentioned that approximately 40% of the time aortic stenosis will cause some for of anemia but they can't explain why. At this point I scheduled the surgery.
I also had a 36 gene panel focused on genetic mutations related to aortic aneurysms and connective tissue abnormalities. Surprisingly they all came back negative. I say surprisingly because I had conflicting data from an earlier study about 15 years ago that was probably not as robust and did not have all the fully validated genetic mutations available at that time. This new information did very little for my decision but it does help with managing sibling expectations and downstream management of the offspring of my children. If I had been positive this would have been a third "ahah" moment for me driving me to surgery sooner rather than later.
So to summarize for others with bicuspid valves with or without aortic aneurysms, you may want to consider the following:
1. Yearly echos
2. Stress echo once you approach the severe stenosis stage
3. If there is any sign of a moderate aneurysm, have everything replaced at once if feasible. You can still take a decision regarding mechanical, bio, or just repair regardless.
3. Genetic testing just for extra information that may help guide you and your decisions plus provide family risk data
4. Obvious, but capture multiple opinions regarding the surgical approach. My two surgeons had significant differences to their approach.
I will include and edit my post with a few publications that were useful for me once I can track them down. I want to thank everyone on this forum for their generous offering of useful information. See you on the other side of surgery.
