Aortic Valve Size

[Agian]

With your tolerance, I'd like to ask a question. My echo shows an AV diameter of 1.1cm. My first cardiologist stated I'll need a valve replacement within 5 years. The surgeon said two to three. The cardiologists I saw yesterday said within twelve months, but then changed her story when I quoted the surgeon.

The surgeon wrote in his report that if it stenosed to less than 1cm, he would see this as an indication to operate.

Less than 1cm is 0.9. How long is it likely to take for my valve to go from 1.1 to 0.9cm?

 

[ski girl]

How long is a piece of string? About that long . . . in other words, it's impossible to say; these things are non-linear.

I went from 0.6 to 1.1 over the period of a couple years. Impossible? Yes - but echos are not exact and the AVA measurement is not a measurement - it's derived from other measurements and then calculated using the Bernoulli equation which assumes your aortic valve is an exact circle. So your next echo could show 1.2!

More importantly - how are you feeling???

 

[Agian]

Well, this is the thing. I've got no symptoms, that I can tell. I'm trying to get some sense of timing for my operation. Sure, it's not an exact science. Yours went from 1.1 to 0.6 in two years, but the way you describe it makes it sound like it was super-fast. Why did they let it get so stenosed before offering you surgery?

 

[yotphix]

Agian, I'm pretty sure she meant that it went from .6 to 1.1, not the other way, as you surmise. Her point was that one echo to the next may or may not give an accurate idea of the relative state of things. Normally, we track things for some time, to get a sense of a progression, understanding, as she pointed out, that it is non-linear.
As to timing, there is no way to predict with any accuracy. I turned up in a doctor's office asymptomatic, but with 'moderate to severe' stenosis and like regurgitation. It was 9 years later that there was a change significant enough to suggest that surgery was the preferred course. There was no recognizable progression over most of that time, just over the very last 12 months or so.

 

[Julian]

Nailed it! Thank you professor...

How long is a piece of string? About that long . . . in other words, it's impossible to say; these things are non-linear.

I went from 0.6 to 1.1 over the period of a couple years. Impossible? Yes - but echos are not exact and the AVA measurement is not a measurement - it's derived from other measurements and then calculated using the Bernoulli equation which assumes your aortic valve is an exact circle. So your next echo could show 1.2!

More importantly - how are you feeling???

 

[ski girl]

Yep, 0.6 to 1.1. My cardiologist was more concerned when he saw a change on my ECG that indicated my heart was starting to compensate for the rubbish valve. It was only then that I even realised I had anything like symptoms - and only because I had two years of GPS data from 4-5 times weekly training sessions that showed a decrease in performance.

 

[Agian]

They let me look at my valve on the echo. If I was a dog, I'd want to bury it.

 

[pellicle]

Hi

They let me look at my valve on the echo. If I was a dog, I'd want to bury it.

ahh ... you'll be fine ... its just a valve. That can be replaced. I've become a bit of a cyborg with valve and aortic graft

Surgery statistically works out well, so as long as you do the right thing and you don't have any other "co-morbidities" you'll be fine.

Chin up and get in there

 

[Agian]

Yeah, I agree. The surgeon told me it is a routine procedure. I would just appreciate some consistent information from these so-called experts. I get the impression that some of the people on this forum know more about this stuff than some cardiologists. The guy I saw last month told me to have a repeat echo in two years. The cardiologist I saw yesterday initially told me I'd need a valve replacement within 12 months.

 

[Julian]

There is truth to this. I don't know the exact statistics but I think valve disease only accounts for 10% of heart patients. Learn all you can!

Yeah, I agree. The surgeon told me it is a routine procedure. I would just appreciate some consistent information from these so-called experts. I get the impression that some of the people on this forum know
more about this stuff than some cardiologists. The guy I saw last month told me to have a repeat echo in two years. The cardiologist I saw yesterday initially told me I'd need a valve replacement within 12 months.

 

[epstns]

The real truth is that each patient's valve progresses at its own rate. They can not tell you with any certainty when yours will be ready to be replaced. All they can tell you is that when it gets to be less than 1.0 cm2 (that's less than 1 square centimeter in area) they will recommend that you have it replaced. That does not mean that something bad will happen as soon as it gets that small. In all likelihood, you will start to feel more fatigue, tiredness, than you usually do and you will tell your cardio that you want to get it done. When I asked my cardio how much notice he would give me in telling me to have surgery, he told me that with aortic stenosis his patients usually tell him when it is time for surgery, rather than he telling them. As long as you keep up with your check-ups and listen to your body, you won't die from this. Yes, if you ignore it and let the valve get too "tight" you could suffer sudden cardiac death, but odds are that you will go to your cardio and tell him "It's time." before that point comes. That's what I did. I told him that I was tired of being tired, and that I wanted to get it done.

That said, at time of replacement, my natural valve was at about 0.8 cm2, and I was still exercising almost daily. That was possible because I was in pretty good shape, and because the body is able to compensate for a wide range of shortcomings. My heart was able to compensate well enough to lead a normal life until way past the point where most surgeons would have operated. My doc said that although the numbers said we could operate, he could not in clear conscience recommend it any sooner because my exercise tolerance was beyond the normal range for my age, and my quality of life was fine. It is all very individual.

 

[big_L]

There's always 'slop' in the measurements and calculations, which others have already indicated. Personally, I've been bouncing around in the 1.0 - 1.2 range until this year, now 0.9, 0.7, 0.86 on the three echos this year. I have two cardiologists (Univ of Kansas and Mayo) saying do it this year and my local cardio saying you need to wait until you're symptomatic. Of course, I could be compensating and not truly be asymptomatic. I'll have it done this year. I'm headed to the Univ of Iowa Med Center in two weeks to meet with the surgeon. It's 80 miles from here and is probably our best option, all things considered.

As I've come to find out, Tom Petty was right "the waiting is the hardest part".

 

[Agian]

Why would you NEED to wait until you're symptomatic?

 

[epstns]

Agian - Waiting until the patient is symptomatic is a long-standing procedure among the conservative cardio's. Their logic is that as long as your odds of dying without surgery are lower than your odds of dying in surgery, they wait. Patients who are asymptomatic are very, very unlikely to die while waiting for surgery. The probability of sudden cardiac death rises a lot with the onset of symptoms, hence their idea is that once the probability of sudden cardiac death rises, time to operate. It sounds cold and impersonal, but it is statistically valid.

Many of the newer, more progressive cardio's, however, recommend earlier surgery to avoid permanent damage to the heart while waiting. These cardio's have a valve area statistic (not sure how small), and when your valve is smaller than that, it is up to you to decide when you want surgery.

 

[Agian]

I'm going to advocate for myself when I think it's time and harrangue the surgeon to operate on me. My cardiologist is a nice lady, but I don't think heart valves are her forte.

Thank you for the information and also your insights on pacemakers, Steve (on the other thread). I respect you guys for taking the time to educate us newbies.

 

[Rachel]

I'm going to advocate for myself when I think it's time and harrangue the surgeon to operate on me. My cardiologist is a nice lady, but I don't think heart valves are her forte.

I think this is wise (IMHO) - if I stuck with the first cardiologist I saw, I might already be dead by now - I had a 5.2 cm aortic aneurysm and he said: "I wouldn't recommend you see a surgeon for the next 20 years ....oh and btw - go ahead and run that 25K you've been training for....."

You would think that we wouldn't have to be our own advocates.....but we do need to educate ourselves and find doctors who are familiar with our conditions because unfortunately we are a small percentage population compared with the other heart conditions most cardiologists treat.

Good luck to you!

 

[clawie1]

I think this is wise (IMHO) - if I stuck with the first cardiologist I saw, I might already be dead by now - I had a 5.2 cm aortic aneurysm and he said: "I wouldn't recommend you see a surgeon for the next 20 years ....oh and btw - go ahead and run that 25K you've been training for....."

You would think that we wouldn't have to be our own advocates.....but we do need to educate ourselves and find doctors who are familiar with our conditions because unfortunately we are a small percentage population compared with the other heart conditions most cardiologists treat.

Good luck to you!

Right On Rachel,

You are so right about being your own advocate. I have been tracked for the last 13 years for AS (2000-2013). My condition went from mild to moderate and in the last year I "graduated" to severe. For the last 13 years I was told to watch for ankle swelling, dizziness, fainting, etc. During these years, I had no symptoms, or so I thought. When I tired, I passed it off as getting old after all I was doing zumba3x a wk, cardiokickboxing 1x a week, and strength training. My internist daughter told me I was showing symptoms but, I brushed it off until....

My daughter admitted a patient who was on vacation - 2,000 miles away from home. The patient explained she has AS but had no symptoms that is until she was brought into ER in full cardiac failure. The patient had to pay to be airlifted back to Boston at a cost of $35,000. ( Yes, she had travel insurance but the company considered her condition "pre-existing"). Well, this was a wake up call for me. I hit the internet and did some serious research, and I joined this forum. I had a crash course in Aortic Stenosis and I read many, many stories about those of you that will or have had "the surgery". I also asked questions about the kind of surgery used to fix our valves, and that's where I discovered we have options.

I was convinced I wanted minimally invasive surgery because quite frankly I am a "chicken". I have since learned it not about what I want but it depends upon my body, i.e., if I have a blockage(s), then minimally invasive surgery is out. Armed with my new knowledge, I went to my routine cardio visit on July 13, 2013 (at this point I am starting to feel a little more exhausted) and was told "now is the time". My cath is scheduled for July 23 (though the wrist). I am hoping my genes, Jane Fonda workouts, and watching my trans fats, pays off. What surprised me the most, was the cardio never mentioned minimally invasive surgery options until I brought it up in fact, he seemed surprised that I even knew it.

Bottom line: As Rachel said, you have to be your own advocate. This is your body, do your own due diligence, stay informed. The stories in this forum are valuable because, for me, I don't feel so alone and I learned so much. Realize full open heart surgery for now is the gold standard, but it is changing. I haven't been scheduled for a TEE, but if my cath shows no blockages, I will have minimally invasive surgery at USC Keck hospital, under the direction of Dr. Vaughn Starnes. If I have to have a full OHS, then so be it. At least I am going into my "journey" knowing I gave it my best shot - educating myself, asking questions, and following advice given here at these forums. Thank you all.

I will update after my cath. Sorry for the long message
Clawie 1 aka Nita