Longest period known before aortic valve replacement needed

[CAG12345]

I was diagnosed in March of 2023 with moderate, no symptoms, routine GP visit sent me to a cardiologist. Eight months later, it was another echo and they diagnosed it as severe. I waited another year (insurance reasons) and based my decision on the tesst results; pressure in that chamber was ever increasing. Advice from everyone I brought it to was don't wait until you are symptomatic; and end of July had a mini-AVR...still wasn't symptomatic...so woke up feeling worse than when I went in.

Best advice I've seen in here was from Pellicil, monitor the test results...no need in doing any further damage that "might" not be able to be undone.

PS I'd had my bicuspid murmer since childhood...the stenosis...I don't know when that actually began. Best wishes to you.

Thank you very much for sharing your staging of diagnosis dates and when had surgery and whether had symptoms. I am hope that your recovery from surgery went well and you really well now

 

[dornole]

I had mitral stenosis, not aortic and had a balloon-based repair in 2002. I stayed at mod or mod-severe for 22 years before becoming severe and symptomatic again this August and proceeding to MVR surgery on Oct 16. I was told that that only 3% of patients got 20 years from a repair so I was quite lucky it lasted so long.

 

[CAG12345]

Thank you. I am glad your first repair lasted so long.

 

[Beach77]

About age 30-34 one doctor heard a murmur, I declined for follow-up to keep it off my charts. At age 50, asked for an echo/stress test because of family history and the murmur (that no other doctor had heard). My bicuspid valve was diagnosed, with mild to moderate stenosis, was told to follow-up in 10 years. Twelve years later had moderate to severe stenosis. 2 years later it was severe with some symptoms. It was difficult breathing going up stairs/any elevation gain, walking up small hills. My valve was replaced @64. Total 14 years from the knowledge of the bicuspid w/ mild/moderate stenosis to severe.

 

[CAG12345]

Thank you very much for sharing your timeline with me.