TAVR procedure recommended for me

Posted by toshy @toshy, Jul 18 11:25am

I have done a lot of research on TAVR procedure. Structural Heart team suggest I do the TAVR procedure for my severe aortic stenosis. However, the risks of both regular and silent strokes are very concerning. Particularly, the chance of silent strokes happening are 75% - 100%! This is extremely scary as I never had a stroke. Without TAVR, mortality rate is bad also. Would greatly appreciate input from anyone who had a TAVR procedure and your outcomes. Thank you. Regards

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Profile picture for toshy @toshy

If anyone has had TAVR, please advise where I can find helpful and frank information about how it turned out days/weeks/months afterwards and if you had any strokes. I do realize that each patient is inherently different, but the decision to go forward with TAVR is either enjoy the time I have left without worrying of imminent demise, or get the procedure and keep dreading of stroke possibilities happening any time, anywhere with limited mortality!
Thank you.

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The choice isn’t TAVR vs. stroke—it’s TAVR vs. the very real risk of sudden death from severe aortic stenosis. I had TAVR even though I was asymptomatic. My stenosis was severe to critical, and no one could explain why I wasn’t having symptoms—but that didn’t make it less dangerous.

Sudden cardiac death from severe AS can happen without warning, and survival after cardiac arrest is extremely rare. TAVR likely saved my life. The risk of stroke is low—about 1–2%—and usually occurs during or right after the procedure, not later on. For me, the far greater risk was doing nothing.

Everyone’s case is different, but if the valve is that narrowed, “waiting and seeing” can be the riskiest option of all.

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I have severe sub aortic stenosis and repair requires open heart surgery. I also have no symptoms but am not uncomfortable with my doctor’s wait and see approach. I feel that the best thing for me is to go to the Mayo Clinic even though my providers are at Columbia, a highly regarded medical teaching hospital. Your post was invaluable for me because it confirmed my concerns.

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Profile picture for blwood1 @blwood1

The choice isn’t TAVR vs. stroke—it’s TAVR vs. the very real risk of sudden death from severe aortic stenosis. I had TAVR even though I was asymptomatic. My stenosis was severe to critical, and no one could explain why I wasn’t having symptoms—but that didn’t make it less dangerous.

Sudden cardiac death from severe AS can happen without warning, and survival after cardiac arrest is extremely rare. TAVR likely saved my life. The risk of stroke is low—about 1–2%—and usually occurs during or right after the procedure, not later on. For me, the far greater risk was doing nothing.

Everyone’s case is different, but if the valve is that narrowed, “waiting and seeing” can be the riskiest option of all.

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By the way, that's 75 to 100% figure you're citing is I think a significant misinterpretation. I think you may have read about benign lesions that occur after many cardiac procedures and are clinically insignificant, especially with newer valves and procedures. I mean, I was worried about this too, but when I talked to the Clinical Fellow who visited me just before the procedure, he noted that just a great many people have these lesions as they age. And it's true:

Silent cerebral lesions (SCLs) are detectable by sensitive MRI in many older adults, without cardiac procedures, such as TAVR.
https://www.ahajournals.org/doi/10.1161/01.str.0000052631.98405.15?utm_source=chatgpt.com

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Correction: I am uncomfortable withy doctor’s wait and see approach.

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Profile picture for blwood1 @blwood1

The choice isn’t TAVR vs. stroke—it’s TAVR vs. the very real risk of sudden death from severe aortic stenosis. I had TAVR even though I was asymptomatic. My stenosis was severe to critical, and no one could explain why I wasn’t having symptoms—but that didn’t make it less dangerous.

Sudden cardiac death from severe AS can happen without warning, and survival after cardiac arrest is extremely rare. TAVR likely saved my life. The risk of stroke is low—about 1–2%—and usually occurs during or right after the procedure, not later on. For me, the far greater risk was doing nothing.

Everyone’s case is different, but if the valve is that narrowed, “waiting and seeing” can be the riskiest option of all.

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Thank you for your reply. I wanted to go to the Mayo Clinic for my TAVR procedure as they are considered the best for this procedure. However, I am in Colorado and numerous follow ups are easier from home. Unfortunately, I am unable to get satisfactory info on my status as the ego of the doctor and appointment time allotted is 15 minutes! Thanks to your kind reply as well as from others, I get some valuable answers. May I please ask you where you had your TAVR done? Physician expertise is important.

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Profile picture for blwood1 @blwood1

By the way, that's 75 to 100% figure you're citing is I think a significant misinterpretation. I think you may have read about benign lesions that occur after many cardiac procedures and are clinically insignificant, especially with newer valves and procedures. I mean, I was worried about this too, but when I talked to the Clinical Fellow who visited me just before the procedure, he noted that just a great many people have these lesions as they age. And it's true:

Silent cerebral lesions (SCLs) are detectable by sensitive MRI in many older adults, without cardiac procedures, such as TAVR.
https://www.ahajournals.org/doi/10.1161/01.str.0000052631.98405.15?utm_source=chatgpt.com

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The study you say it is from 2014. There is a study from 2022, with a reasonable number of subjects,,which I hope you will find more encouraging:
https://www.aging-us.com/article/204202/text
It suggests cognitive performance is stable after three months and up to one year and at least in lower risk subjects (people without so many comorbidities, or a lower baseline of cognition) actual improvement, probably based on greater cerebral perfusion. In any case, I stand by my earlier point, that there is a greater risk associated with not treating severe aortic stenosis, even if you are not having symptoms presently. This point was made to me by the interventional cardiologist who treated me at Hopkins, and also by my best friend who is a family physician. She told me that she was worried about me all the time until I had the procedure because she knew that if I arrested, there was almost no chance that I could be revived. Also, I am an exercise fanatic, so fortunately there had not been major structural changes to my heart due to this stenosis by the time I had the procedure. And reduce blood flow to your brain is unlikely to be helping your cognition. Honestly, I'm an anxious person, but I knew that I had to do this. I'm a daily meditator and I relied a lot of that to calm me down and I watched a lot of of YouTube videos of the procedure to desensitize myself in advance.

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Profile picture for toshy @toshy

Thank you for your reply. I wanted to go to the Mayo Clinic for my TAVR procedure as they are considered the best for this procedure. However, I am in Colorado and numerous follow ups are easier from home. Unfortunately, I am unable to get satisfactory info on my status as the ego of the doctor and appointment time allotted is 15 minutes! Thanks to your kind reply as well as from others, I get some valuable answers. May I please ask you where you had your TAVR done? Physician expertise is important.

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I had it performed at Johns Hopkins in Baltimore. I thought they were great. Highly skilled and compassionate.

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