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Hey all...

I have posted here before and I was diagnosed with bi-cuspid aortic stenosis a year and a half ago. I had a 1.3 cm2 area then a year later it reduced to 1.0 cm2. I just had a echo this week and was told no changes from my last echo 6 months ago. It kinda took me by surprise because I just thought I was on a decline to avr surgery. I did change some dietary issues about 4 months ago. I went gluten free (mostly) and I quit the diet coke and other sodas. I added 1000mcg of Vitamin K2 daily. I was supposed to give up dairy but I love cheese. I have no idea is this made a difference or this is just the way it goes, but I figure if I can put off surgery every 6 months then yay!! My job requires me to be off a minimum of 6 months so its quite a financial hit.

Just thought I'd give an update.

Thanks
 
Good news! I have mitral stenosis and regurgitation, and over the last 15 years it's gotten worse, then parked at the same spot for a long time, and sometimes even "gotten better" with more accurate tests. I've even gone from 6 month echoes back to 12 month ones. So it's not necessarily linear at all. Unpredictable so always get your tests and also try to live your life and not worry until they say "go time"
 
The "change" from 1.3 cm2 to 1.0 cm2 could also be "normal variation" between echo techs, equipment and interpretations. Even at 1.0 cm2, most docs will wait for another confirming reading around there before planning surgery. Just remain watchful and try to live your life. You may stay at 1 to 1.3 cm2 for a while. I know I did. . .
 
epstns;n881729 said:
The "change" from 1.3 cm2 to 1.0 cm2 could also be "normal variation" between echo techs, equipment and interpretations. Even at 1.0 cm2, most docs will wait for another confirming reading around there before planning surgery. Just remain watchful and try to live your life. You may stay at 1 to 1.3 cm2 for a while. I know I did. . .
Click to expand...

The tech was the same, I only go by the gradients because that is what is failing for me to be able to work per the FAA, There was a big change in the gradient along with the cm2.
 
Got it, Cactus. Yes, major changes in gradients (and flow velocities) are more reliable than calculations, and I feel your pain at being grounded until this is resolved. I was just out here, looking for some hope that there was a way to buy some time.

It really stinks if doc says "Not yet." and FAA says "Grounded until. . . "
 
Well I'm not grounded yet. When the mean hits 40 then I have to take a seat and schedule surgery. Why I don't mind waiting knowing there is a defect and I do feel the effects such as tiredness and I can't go run trails and be as active as I want is the frustrating part. Part of me does not want to go under the hammer and chisel but I would like to feel whole again. So I wait lol....
 
Well a bit of a update.... Had a chat with my FAA Cardiologist the other day at my 6 month exam. It's funny but 6 months ago I asked about TAVR and he said it was for older more at risk patients. This time he brought it up acting like it was the best thing ever. He said he had 2 patients last week undergo the procedure and had incredible results and said that I should plan on that procedure when I need to undergo AVR. So I guess things are a changing.....
 
Guest;n881702 said:
Hey all...

I have posted here before and I was diagnosed with bi-cuspid aortic stenosis a year and a half ago. I had a 1.3 cm2 area then a year later it reduced to 1.0 cm2. I just had a echo this week and was told no changes from my last echo 6 months ago. It kinda took me by surprise because I just thought I was on a decline to avr surgery. I did change some dietary issues about 4 months ago. I went gluten free (mostly) and I quit the diet coke and other sodas. I added 1000mcg of Vitamin K2 daily. I was supposed to give up dairy but I love cheese. I have no idea is this made a difference or this is just the way it goes, but I figure if I can put off surgery every 6 months then yay!! My job requires me to be off a minimum of 6 months so its quite a financial hit.

Just thought I'd give an update.

Thanks
Click to expand...

Hi and glad things are not progressing! I take K2 daily but a 1000 mcg seems like a lot. Is there a reason you take that much? Thanks.
 
Cactus52;n881741 said:
The tech was the same, I only go by the gradients because that is what is failing for me to be able to work per the FAA, There was a big change in the gradient along with the cm2.
Click to expand...

I don't want to be a party pooper, but I can tell you that I had a variation in aortic size and gradient from the same tech and echo 6 months after the fact. I was really freaked out as it was quite soon after my AVR. Further testing indicated that it was indeed a technical error. I know every situation is different, but just wanted to share. I was told that they look at the long term linear patterns and if there is a big change, then typically further testing is done to confirm. Hang in there...sounds like you are doing well.
 
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