General physician says aortic valve at 1.3 cm with stenosis of the aorta.

[paulschumann]

just got a call from my doc and she says aortic valve at 1.3 cm with stenosis of the aorta. she assumes I'm probably looking at surgery within a matter of months, and is reffering me to one of the St. Alexis cardiologists to review everything.

On a lighter note she said if it wasn't for the aortic valve I'm one of the healthiest patients she's looked at. blood pressure 120 over 60, cholesteral is low, blood cell counts perfect, kidney, liver function, etc etc is all textbook.

I don't know exactly what 1.3 cm means. what is a normal measurement for a bicuspid aorta and what is a very bad measurement that usually requires surgery? just curious where I'm at. is 1.3 expected for a 32 year old born with BAV?

 

[ken taylor]

Paul , Those were my measurements 2 and 1/2 years ago , I will be in surgery next week, Dont wory you will be fine.

 

[epstns]

Paul, We're all the same, only different. I, too, had aortic stenosis and my valve stayed at around 1.3 or 1.2 cm2 (square centimeters of area within the valve when it opens) for several years. During those years I did all the stuff a guy my age would have done, and some of the stuff a guy your age would have, too. (My stenosis was diagnosed at age 54, surgery at age 63.) It all depends -- each of us is different and our hearts compensate in different ways. It is amazing what some people can still do with badly compromised valves while others are on the way into the OR much sooner. Being healthy and in good shape helps. Having a good cardiologist helps, too.

My guess is that unless some other serious conditions are noted, a cardiologist would estimate your need for surgery in a few years, not months - especially if you don't have any symptoms yet. (The "cardinal" symptoms of aortic stenosis are syncope or fainting, shortness of breath or chest pain.)

See the cardio, hear what he or she says, then you will know more about your specific situation. We'll be here for you.

Ant, by the way, welcome to The Waiting Room - the virtual room where many of us wait for their own turns at valve surgery.

 

[bdryer]

Hello

I was told by my cardiologist that the normal opening of the aortic valve is about 2.5 cm2. Your BAV at 1.3 cm2 is only opening about 1/2 of what a normal AV would open.

Discovery of my bicuspid aortic valve was not found until it had regressed to .6 cm2 and severe aortic stenosis developed. Regurgitation was also prevelant. I was not knowingly symptomatic at the time of discovery. The reduced opening of the BAV caused an aneurism of the ascending aorta. When the BAV was removed, the opening had regressed to .5 cm2. I was symptomatic prior to surgery. It took 5 1/2 months to get me in for surgery after discovery.

Have the surgery accomplished before the aortic stenosis degrades the AV to a life threatening condition, or an aneurism of the ascending aorta develops.

Note that as the AV narrows the left ventricle hypertrophies and causes an > in BP to eject the blood out of the narrowed opening of the AV to satisfy blood volume to your body. The Hypertrophy can also develop to a life threatening state. A wall thickness of the LH ventricle up to 16 mm will normalize to a norm of approximately 11 mm. > 16 mm, their is a chance that the LH ventricle will not atrophy to a normal wall thickness. Wether you know it or not, the LH ventricle may be thickening to compensate for the reduced opening of the AV. As a result your text book BP will also >. As the LH ventricle thickens, it stretches the nerves and nerve damage may result upsetting the electrical stimulation of the LH ventricle. My hypertrophy caused a bundle branch block. As a result a pace maker may be required later in life. Presently the electrical impulse to my LH ventricle has found an alternate path and I am monitored only. Get your AV replacement done before the LH ventricle hypertrophies.

 

[paulschumann]

The only symptoms I have ever had is some irregular heart beat episodes that happen once or twice a week, usually noticed when lying in bed before I go to sleep at night. the irregular beats only last a half to 2 seconds about 1 to three heartbeats worth. As far as energy goes I can dead sprint a quarter mile if I needed to, I am still just as active as I ever was and havn't noticed any shortness of breath or lack of energy.

Now that this information has been brought to light, is there anything I should or shouldn't do while waiting for a cardiologist. Obviously I shouldn't smoke a fat bag O' crack, but I mean should I be taking it easy, or just go about my day to day activities and maybe just avoid the real strenuous stuff. would more exercise like regular jogging help or make things worse. can I have a few beers with friends on a friday night or is alchohol a big no no? since my bloodwork was all 110% I assume I don't have to do much with my diet. Am I currently at risk for a heart attack? should I avoid hiking and traveling alone miles from a phone or a hospital?

Whats your opinions of St Alexis' cardiologists? and would Mayo be a good plce for the surgery when the time comes.

thanks again for everyones responses and this website. without you guys I'd be in the fetal position in my dark closet rocking back & forth with my thumb in my mouth.

 

[drivetopless]

Avoid the Fat Bag of crack for sure

Avoid the Fat Bag of crack for sure

Hey, there-
I was diagnosed at 1.0 cm2. 2.5 cm2 is the normal aortic diameter. Anything under 1.0 cm2 means its time to start paying attention, so you probably have some time. It seems that the Aortic Stenosis can be stable for years, but when it starts changing it can accelerate in its deterioration. My BAV sat at 1.0 for 11 years before it started getting worse.

You hopefully don't do recreational drugs, but definitely avoid any stimulants as found in many energy supplements. They are just too much for a heart that is already working harder than normal.

The only activity I was told to avoid while in the wait and see is marathons. Bdryer is correct in that when you have your annual echo to keep track of if your heart is thickening/enlarging. It is helpful to get a copy of your echo report and to learn what someof those numbers mean (diameter, pressure gradient, LV thickness). You want to catch it before you reach the point of permanent damage. However, if you feel good and the doc says it is okay, I personally think waiting until the last possible moment without incurring permanent damage is good because the technology is only going to get better with time.

Good luck. Keep us posted.

 

[epstns]

Paul, The other activity I was told to avoid was heavy weight lifting - at work or at the gym. This instruction was given for two reasons. First because we did not then know the condition of my aorta, and there is some likelihood that people having bicuspid aortic valves may also have aortic aneurism (mine turned out to be fine), and second because heavy weight lifting causes an increase in blood pressure, and with a stenotic valve the pressure within your heart is higher than normal and the increase caused by weight lifting can cause real problems.

Other than that, I ran (then as things got worse, I jogged), lifted lighter weights (until the last few months), rode a bicycle, did home and hobby projects -- pretty much anything I would have otherwise done. I just found that over time I had less and less energy. It wasn't until the last couple of months prior to surgery that I noticed a drastic decline in exercise tolerance and stamina. It happened too fast to be "old age" so I attribute it to the valve. Now that surgery is out of the way, I'm trying to see how much of that decline I can reverse.

 

[ALCapshaw2]

MANY Cardiologists and Surgeons use an Effective Aortic Valve Area of 0.8 sq cm as their 'Trigger' for recommending Valve Replacement Surgery so you are most likely in the "Wait and Watch" category with at least annual EchoCardiograms. As you approach 0.8 sq cm, your Cardio may recommend an echo every 6 months.

'AL Capshaw'

 

[bdryer]

Hey gang

Lets take this > in BP in the LH ventricle due to a BAV and the associated AS a little further. I had my follow up with the surgeon last week. The nurse took my BP and it was a whopping 158/86. Mind you I was running between a blood draw for INR and my meeting with the surgeon. The surgeon said not to worry, I was like WTF, don't worry! He said pre surgery my BP was high normal, even though the LH ventricle was hypertrophied to 16 mm and had developed an increased BP to push the blood through the restricted orifice of the AV. A px drop across the .5cm2 BAV occurred after it was ejected from the LH ventricle. Hence I had a BP of 130/83, not 158/86.

Now post surgery, the BP in my LH ventricle is still high as the heart has not as yet remolded. [Most of the regulars here at VR.ORG know it takes about a year for the heart to remodel. BP and ventricle hypertrophy decreases to normal during the remodeling]. Presently the blood is free flowing through a 2.3 cm2 opening instead of a .5 cm2 opening. Their is very little px differential across my new valve. Pre surgery with my BAV, the Px diff across my BAV was 45-56 psi, post surgery with my MAV, the px diff across my On-X AV is 4-6 psi, [a huge difference!] Now the BP measured at the BP cuff in my arm now reads the same as my LH ventricle. 5 mg of enalapril, along with 50mg of metoprolol 2x daily keeps the BP in check. Cool eh?!

 

[epstns]

I'm having much the same BP anomaly. Before surgery and medications, mine was 150/100. Before surgery but with meds, it went down to about 120/76. Now it is often back up to the area around 130/96, and nobody is worried about it. I'm only about 11 weeks post-op, so I still have a lot of healing and remodeling to do I guess.

 

[New Guy]

Paul,

I had my aortic valve replaced at Mayo last July. They do a lot of these type surgeries and the whole team from surgeons to nurses to administration was excellent in my opinion. When I had questions before and after the surgery my cardio would call me that day and my surgeon would reply by email the same day too.

If I had to do it again I'd go back to Mayo.

 

[Ras1151]

paul

My valve was 1.1 cm2, When I had my surgery. I had SOB, and the chest would tighten up if I ran to the end of the driveway.
My doctor did a Coronary Angiography, when he was done with it, He said I needed the surgery asap.

 

[Rocky]

From all my research 1.3 cm in size would equate to Moderate aortic stenosis, and you are about in the middle of that category.

Severe aortic stenosis is when the valve is less than 1.0 cm sq.

Critical aortic stenosis is when the valve is smaller than 0.6 cm sq.

Critical usually gets everyone's attention really quick and surgery is often immediate. My AV measured at .5 cm on the Doppler and it was so small that they could not get inside the heart to do the look see with the angeogram. They had to do a CT scan to see that part.

The surgeon gave me two to four months to live. I had the surgery in a months time from the first ultrasound. Now i am in fine shape and the only residual I have is pain chest when I sneeze and it is less and less every day.

The good news for you is that the valve is not so small as to be an immediate issue and your excellent health is a bonus. Of course, that is a laymans answer, and you need to listen to both your physician and your cardiologist and do EVERYTHING they say.

Your excellent health might be your biggest problem. You will feel like you are fine, so might be tempted to do something you should not. That is what happened to me, and it almost killed me.

At least you know the issues. I thought I had a persistent cold, and it turned out that I had Congestive Heart Failure with no more than a few months to live.

One thing for sure, the view from this side of the surgery is very different than what it was on the other side. The volume of things I no longer care about, would stun an oxen in its tracks.

 

[Jason]

I'm having much the same BP anomaly. Before surgery and medications, mine was 150/100. Before surgery but with meds, it went down to about 120/76. Now it is often back up to the area around 130/96, and nobody is worried about it. I'm only about 11 weeks post-op, so I still have a lot of healing and remodeling to do I guess.

My cardiologist and his nursing staff were at least partially worried about mine when it rose to 145/92 or so, and they put me back on my Lotrel from pre-surgery. It is very interesting to read about everyone else's experiences here, and how treatments differ.

 

[epstns]

Jason - So far they've prescribed a potassium-sparing diuretic for me, as this is usually the "first line" that is tried in reducing high BP. Although it has only been two days since I started the HCTZ, early indications are promising. BP has been around 115/85 on the average. Not great, but not scary bad, either.

 

[normofthenorth]

Paul, I think it's mostly all been said, and +1 to all of it! Maybe especially drivetopless's "waiting until the last possible moment without incurring permanent damage is good". It's a bit of a balancing act, though I think the decisions are probably a few years away for you.

Symptoms matter a lot, for a couple of reasons:
(1) Physically, they're taken as a very strong indication that things have gotten serious or critical -- though most surgeons and many patients will tell you that a BAV can deteriorate a LOT without causing symptoms, even in us "crazy active" people! (My surgeon told me that one of the worst AVs he'd ever replaced was in a patient who scheduled her AVR so she could run a marathon first -- and mine was "in that group".)
(2) Psychologically, if you have a BAVR early, when you still feel PERFECT, you may suffer more post-op, because you won't feel THAT good for quite a while, which may seem like forever. Me, I'm 5.5 months post-op with a pretty smooth recovery, and I've just been cleared to add some jogging to my power-walking. If I hadn't torn my Achilles a year before my OHS, I probably would have been playing competitive volleyball with a bunch of 30-somethings until a few months pre-op. I hope to be playing competitive volleyball in the Fall -- ~10 months post-op -- but I won't be shocked if it doesn't turn out that way, even if everything else is fine.

All the scans and measurements matter, too, because they can help you and your team distinguish between (a) NO compensating changes or damage in your heart, (b) SOME TEMPORARY compensating changes or damage in your heart, and (c) risk of PERMANENT compensating changes or damage in your heart. In addition to the expected enlargement and wall-thickening of the Left Ventricle, and the risk of enlargement and damage (aneurysms) in the Aorta (which MAY be caused by the deteriorating BAV, but it may also be independent, caused by the same mechanisms that are gradually trashing the valve), there's also the possibility of damage to the MV, which is being overloaded with higher pressures and volumes in the LV, to compensate for the stenosis and regurg/prolapse of the AV.

In my case, some minor deficiencies (leakage/regurg/prolapse) in my MV -- which I was told would resolve naturally when the BAV was replaced with a new one -- turned into "repair or replace MV" by the time I was signing a consent form for the op, maybe 6-9 months later. In hindsight, I could very probably have skipped my MV repair (and the threat of a double-valve replacement! and also 3 months of Warfarin/ACT/INR testing) by having surgery when I still felt fine. Whether or not it would have driven me nuts to come out of "being fixed" in way worse shape than I went in, is a question for a parallel universe, not this one.

In my case, my Cardiologist was pushing me to have the op sooner, while my heart surgeon (like me) was in less of a rush. I'm doing fine the way I did it, and the other way (sooner) might have been better or worse.

Good luck! It will get worse, but then it will get fixed, and you'll be better again!

 

[ron]

(c) risk of PERMANENT compensating changes or damage in your heart. In addition to the expected enlargement and wall-thickening of the Left Ventricle, and the risk of enlargement and damage (aneurysms) in the Aorta (which MAY be caused by the deteriorating BAV, but it may also be independent, caused by the same mechanisms that are gradually trashing the valve), there's also the possibility of damage to the MV, which is being overloaded with higher pressures and volumes in the LV, to compensate for the stenosis and regurg/prolapse of the AV.
!

Norm,

What is considerd Permanent comopensating changes? What are the implications of this?

I am asking this because I have moderate LVH and Stage 1 diastolic dysfunction. I saw 3 cardiologists about this. They all said that the enlargement was not a cause for concern, and none of them mentioned anything about the diastolic dysfunction. I assumed that this meant that there was an issue, but not far along enough yet to cause permanent damage. All they said was that the first order of buiness was to fix my stenotic valve (0.8) and recommended to do it by the end of the calender year.

 

[normofthenorth]

Ron, sorry I missed your question 'til now -- probably because the "New Posts" feature here only shows posts from the last few minutes (OK, I'm overstating a LITTLE. . .).

I don't know anything about diastolic dysfunction, whether it's Stage 1 or a subsequent stage, sorry. Some amount of LVH is expected with Atrial-valve stenosis, and some amount is reliably NOT permanent. I don't know how much is too much, or even how it's measured, but I assume that if 3 cardiologists all said that your enlargement is not (yet) a cause for concern, then it isn't.