Length of time between diagnosis and AVR

[Nocturne]

What is the longest amount of time a person can be in the "waiting room" after diagnosis of AS but before needing AVR?

I know it can vary wildly from person to person but was wondering about best case scenarios.

 

[epstns]

I guess this one is kind of like asking "How big is the sky?" The answer really isn't important, except in the context of your own case. Some patients are diagnosed with stenosis as young children, then go on to live normal lives for many years. Others are diagnosed and are moved directly to surgery. There are too many variables for the general answer to mean very much to a single patient.

I think much has to do with your age at time of diagnosis. I was first diagnosed at age 51 or 52. I then went on to lead a rather normal life all through my 50's and up to age 63, when I decided that it was time for surgery. I "think" I was in The Waiting Room for over 10 years, which is a fairly long time to wait for someone diagnosed as late in life as was I. There are others here who waited longer than I, but if I remember them correctly, they were diagnosed earlier in their lives yet still were able to hold out until their 50's or later for surgery.

The other reason that this question is so hard (or may be impossible) to answer is the fact that for each patient, the condition progresses differently. Some patients are diagnosed, then their condition progresses very slowly. These patients are able to wait, as they are in no danger from their condition. Other patients are diagnosed and their condition progresses very rapidly, seemingly to go directly from a slight murmur to emergency surgery. There is no way to know for sure. Usually, the cardio's like to be able to evaluate sequential echo-cardiograms over several years to even begin to guess if their patient will be a long-term denizen of The Waiting Room or not.

I wish there was a way to definitively answer your question, but if there is a single answer, I don't know it.

 

[cldlhd]

I was the waiting room 11 months. I could have been there much longer but didn't want to wait any longer so I decided to get it done. My aneurysm wasn't big enough to require surgery but was big enough to give me restrictions I didn't want. I had my surgery 14 months ago and I'm so glad I went through with it. I imagine that depending on your specific situation you could wait a very long time .

 

[Paleowoman]

Heart murmur heard at 25 - the murmur would have signified /narrowing due to the BAV. AVR at 60.

 

[Dodger Fan]

Murmur first heard at 20. BAV diagnosed at 21. AVR 3 days before 39th birthday.

 

[T in YVR]

Diagnosed in mid-Jan/13; I had AVR Oct. 1/13 at age 47 (viewed as "moderate to severe" with dilation of LV). I waited about 8.5 months, mostly due to just having to grind my way through the system and wait my turn behind other more critical patients. You couldn't get me in fast enough...the waiting is the hardest part (as Tom Petty says!). Just wanted to get it behind me and not put off the inevitable...

 

[almost_hectic]

Diagnosed at 29, AVR at 45

 

[ForeverThankful]

BAV diagnosed at age 55 in August 2015, AVR in October 2015

 

[yotphix]

I was about 10 years from diagnosis to surgery. I met a guy at the hospital who was about 10 hours from diagnosis to surgery.
In my case, the diagnosis resulted from the curiosity of an observant GP, while my stenosis was moderate, and regurgitation between moderate and severe. I was entirely asymptomatic. In his case, diagnosis was in the ER, after he collapsed at the gym.
In my case, surgery was scheduled three months ahead, in the hope of preventing further remodelling, and in hope of complete recovery of former cardiovascular capacity (It worked!). In his case, surgery was an emergency valve and aortic arch replacement.
It really does vary.

 

[LiamF]

It was about three years from when my murmur was first heard (by my son) and the aortic dilation noticed and the time when the doctors decided that my valve was stenosed enough to merit surgery. TBH as soon as I started to get symptoms they stepped in. So from the day when the surgeon said "yep, it's time, to the actual operation it was about two months..."

 

[jjay32]

I have been in the waiting room for about 8 years. Started following when I was 52 years old, It is looking like next year will be the year for surgery.

 

[Richie Rich]

I was diagnosed at 15, I'm 42 now and still waiting. My cardio tells me my BAV still functions well and that my enlarged aorta may be what forces surgery eventually, although it's not big enough yet we are watching it closely. I was initially diagnosed due to a murmur & it's leaked all my life.

 

[Fingers]

Had a heart murmur from birth. In my high school days they thought I had additional damage from rheumatic fever, though do not recall ever having that. It was diagnosed as BAV with mild/moderate stenosis and a prolapsed MV in my late 30's (spent lots of years in between avoiding doctors). The AV stenosis as finally crossed over to severe at 55 yrs old. I can go in for AVR/MVR at anytime now.