I've crossed the line into severe and need to make a decision

[Chuck C]

Hi all.

I have really enjoyed being here on the forum for the past few months and appreciate all the shared experiences and knowledge. I’m 53. My BAV and moderate aortic stenosis was discovered 20 months ago. I’ve stayed in the moderate range on my echos, with AVA 1.1cm2 on my last two, but then last week it dropped suddenly to .87cm2, crossing the threshold into severe AS. Both peak jet velocity and mean pressure gradient appear to agree, at 4.2 m/s and 46mmHg. I’m being seen by a very competent team at a top valve clinic. My cardiologist has told me that we can operate now or wait for symptoms- my decision. I am asymptomatic and have not experienced any slowing down. I hike briskly up a 1,200-foot mountain daily and keep a very good pace. Occasionally my friends and I all push for time and I beat them all pretty handily, so I don’t believe that I am compensating by slowing down my pace. I feel great and have a lot of energy. On the one hand, I want to put off surgery as long as possible. On the other hand, I find the conclusion of the meta-analysis published last year in JAMA Cardiology very compelling, showing significantly improved long term outcomes when surgery was done for severe AS patients before symptoms vs severe AS patients who were symptomatic. “Early intervention was associated with a significant reduction in long-term mortality (hazard ratio, 0.38; 95% CI, 0.25-0.58).” I other words, the long-term mortality was reduced by 62%, if the surgery is done before symptoms present, in this meta-analysis of many studies- I find this result very compelling: Natural History of Asymptomatic Severe Aortic Stenosis and the Association of Early Intervention With Outcomes

My cardiologist believes that I will likely start experiencing symptoms within a year- of course, no one can say for sure when. So, if I wait for symptoms, I can possibly put it off surgery for months up to a year and possibly longer with some luck, but that day is coming soon enough in my near future. Put it off as long as possible or bite the bullet and go with the data from the meta-analysis finding better long term outcomes doing it before symptoms and get surgery now?

I welcome all thoughts, suggestions, and recommendations.

Much thanks to all.

We have a very educated board here that appreciate details, so I am editing to add the following information about my condition:
No aortic aneurism: Max aortic diameter is 3.4cm
Preserved ejection fraction: Consistently 73% to 74% per echo and MRI
LV wall thickness 1.15cm, with LV mass in the normal range

 

[Superman]

Younger and healthier before any permanent damage to the cardiac muscle from overwork would be my preference. All assuming your measurable stats are confirming surgery is necessary and unavoidable. My only caveat would be if I had a borderline aneurysm that was too small to operate, but clearly on a path that would require repair in the future. I would have a hard time letting them take care of the valve and save the aneurysm for later. But as you don’t mention that - there isn’t any obvious second surgery in your future.

Healthier and stronger going into surgery usually makes recovery easier too.
In the end - whatever you choose has to pass your sleep at night test. The above are just thoughts I would have, not what you should necessarily do

 

[Justmadi]

I would think there would stress waiting”for the ax to fall”
if it were me, I’d opt for sooner rather than wait to be symptomatic.
at that point, it becomes a degree of emergency.

 

[rich01]

I assume you will be getting a mechanical valve that will last for a long time, so I think I would get it done sooner than later. The hardest part will be to get past the emotional part so you can make the best medical decision for you.

 

[dick0236]

I agree with the earlier posters. I'd would rather be a little too early rather than a little too late.

 

[Chuck C]

Thanks so much for your thoughts.

"My only caveat would be if I had a borderline aneurysm that was too small to operate, but clearly on a path that would require repair in the future. I would have a hard time letting them take care of the valve and save the aneurysm for later."

I have no aneurism. MRI about 18 months ago had my max aortic diameter at 3.4 cm and echos have confirmed no changes in aortic diameter.

Thanks again. There is certainly a good argument to make to get the surgery before any structural damage that might be irreversible.

 

[Chuck C]

I agree with the earlier posters. I'd would rather be a little too early rather than a little too late.

Thank you for your thoughts. That is certainly my feeling. Every consultation I have done with a cardiologist or surgeon, I have told them that I would rather be 6 months too early than 6 months too late, but I just want to make sure that I don't get it years too early. Perhaps finding that sweet spot is where the art meets the science.

 

[Unicusp]

Thank you for your thoughts. That is certainly my feeling. Every consultation I have done with a cardiologist or surgeon, I have told them that I would rather be 6 months too early than 6 months too late, but I just want to make sure that I don't get it years too early. Perhaps finding that sweet spot is where the art meets the science.

I vote for sooner than later before something bad happens. I was also at .87 AV area in December and now at .78 AV area (but that could be due to a better and more accurate echo done at CC). After pushing myself thru a long day, long workout, etc.. Without going into detail, I had an unannounced syncopal event passing out suddenly with bad results and a trip to the ER for head wound sutures. First time ever happened. Scary as it can happen unannounced at any time and with increasing probability. My surgery is scheduled for this Friday. I'll have to do a separate post for that.

 

[dick0236]

Thanks so much for your thoughts.
"My only caveat would be if I had a borderline aneurysm that was too small to operate, but clearly on a path that would require repair in the future. I would have a hard time letting them take care of the valve and save the aneurysm for later.....

.......I have no aneurism.

Sounds like a "what if". What if you get hit by a bus tomorrow
? Then your concerns about OHS won't matter.

 

[tom in MO]

The advice from you cardiologist is not what I received. I was asymptomatic and based upon my echo was told I needed my BAV replaced. I was told not to wait until symptoms because you could suffer "the syndrome known as sudden death." Based upon my echo, I was told to get it fixed within 2 months. When removed, I was told it was about to fail. Others have received similar advice from their cardiologist, don't wait for symptoms, they could come too late. You might need a second cardiologist's opinion.

 

[Chuck C]

The advice from you cardiologist is not what I received. I was asymptomatic and based upon my echo was told I needed my BAV replaced. I was told not to wait until symptoms because you could suffer "the syndrome known as sudden death." Based upon my echo, I was told to get it fixed within 2 months. When removed, I was told it was about to fail. Others have received similar advice from their cardiologist, don't wait for symptoms, they could come too late. You might need a second cardiologist's opinion.

Thank you for your comments Tom. I will also be consulting with my surgeon soon. The cardiologist is perfectly willing to move forward with the surgery if that is my decision. In reading the literature, it appear that there is agreement on one thing: deciding on when to operate when a patient is severe but asymptomatic is very difficult. I find the argument to get surgery now, rather than wait for symptoms very compelling, especially after reading the meta-analysis published last year which show better long term outcomes when surgery is done before symptoms.

 

[Chuck C]

I vote for sooner than later before something bad happens. I was also at .87 AV area in December and now at .78 AV area (but that could be due to a better and more accurate echo done at CC). After pushing myself thru a long day, long workout, etc.. Without going into detail, I had an unannounced syncopal event passing out suddenly with bad results and a trip to the ER for head wound sutures. First time ever happened. Scary as it can happen unannounced at any time and with increasing probability. My surgery is scheduled for this Friday. I'll have to do a separate post for that.

Thanks for your comments and for sharing your experience. When severe AS causes syncope, there is certainly crystal clear clarity that it is time for intervention.

 

[Eva]

Discussing this with a second cardiologist, and discussing it with a surgeon or two is my advice!.

 

[Chuck C]

Discussing this with a second cardiologist, and discussing it with a surgeon or two is my advice!.

Very good advice Eva and thank you very much. I am a big believer in multiple opinions and I sometimes get a little carried away with getting so many opinions.

 

[Chuck C]

I would think there would stress waiting”for the ax to fall”
if it were me, I’d opt for sooner rather than wait to be symptomatic.
at that point, it becomes a degree of emergency.

Yes, good point. I feel the same way. I like to be in control of the timing of the process rather than wait until it is an emergency. Thank you.

 

[Chuck C]

I assume you will be getting a mechanical valve that will last for a long time, so I think I would get it done sooner than later. The hardest part will be to get past the emotional part so you can make the best medical decision for you.

Yes, I am heavily leaning towards getting a mechanical valve at this point. If you asked me 2 months ago I was almost totally in the bioprosthetic valve camp, but with a lot of research and some excellent data provided by Pellicle and others, I have shifted my opinion and think that mechanical will give me the best chance to have a normal lifespan. I really do not want to face multiple reoperations if I can avoid it, and mechanical seems to be the best way to increase my odds of being one and done.

 

[BillDaThrill]

Yes, I am heavily leaning towards getting a mechanical valve at this point. If you asked me 2 months ago I was almost totally in the bioprosthetic valve camp, but with a lot of research and some excellent data provided by Pellicle and others, I have shifted my opinion and think that mechanical will give me the best chance to have a normal lifespan. I really do not want to face multiple reoperations if I can avoid it, and mechanical seems to be the best way to increase my odds of being one and done.

Hey Chuck C, how about an update on where you are at in the process. I am close behind you, recently moved into the severe AS camp - but at age 51. Hope you are doing well!

 

[newarrior]

I'm new to this whole thing but I hear what you're saying about the mechanical valve you probably will not have to have multiple surgeries. Sorry to hear you're going through all this I'm glad you're still in such good physical shape and thanks for the amazing dialogue that you've inadvertently triggered. We're with you 110% along the way. Please keep us posted.

 

[dornole]

I’d just make sure the echo is correct, confirmed by a TEE. I got one that said severe but then a TEE did not confirm it. That was years ago.

 

[Unicusp]

I’d just make sure the echo is correct, confirmed by a TEE. I got one that said severe but then a TEE did not confirm it. That was years ago.

Actually a CT scan with contrast is the most accurate and used in conjunction with a comprehensive echo. The echo's done in Cleveland are a step above in detail, from what I've experienced elsewhere.