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aortic stenosis without symptoms

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bobcatrel

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I am a 54 year-old active male who was diagnosed 3 years ago with moderate aortic stenosis. I have had 3 echo's and a cath to date. I have no symptoms (except after I have been to the Doctor's and he tells me how bad I am). I run 25 - 30 miles per week, bicycle 45-80 miles a week, and in the winter cross-country ski 10-30 miles per week.

At the last echo the aortic valve diameter was 1.1 cm and the ejection fraction was between 68%-72% There is no enlargement of the LV. The doctor informed me that there may come a time when they will reccomend a valve replacement even if I develop no symptoms.

My question is to other people who have had no symptoms and been told to have a AV replacement.

What type of test results made you consider a valve replacement?
How long did you wait until deciding to go along with the replacement?
What are suggestions you would have for someone in this situation?
Any other info or guidance would very welcome.

I'm new to this site so please excuse my large rambling posting.
Bob Lowe
New Martinsville
West Virginia
 

Ross

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Hi Bob and welcome aboard

Sounds like your a ways off from surgery, but they'll be keeping tabs on you. That's the funky thing about valves. They can last like they are for a very long time or they can go South very quickly. As long as your being followed up on regularly, the time is unimportant.

Test results--Echo, Stress, Tee, CATSCAN, Catheterization, these are all that will help in determining what needs to be done and when.

You wait as long as the surgeon says wait, not the cardiologist. Surgeons like to get things done before damage sets in. Cardio's like to what for obvious signs which sometimes results in permanent damage to the heart.

I'd certainly back off on some of the excercise or do only what your told to do. No sense in pushing for a faster date or worse.

Read around, use the search feature of the forum and you'll get more information then you ever thought possible.

Again, welcome :)
 

tobagotwo

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Your post is fine, Bob. Welcome to the site. I had very few symptoms until my stenosis became severe. There are others who have posted who had none at all before a sudden requirement for AVR.

Your situation is not all that unusual, actually, for a very atheletic person. Sometimes, very aerobically fit people don't develop or recognize symptoms until they are very nearly dead (and occasionally not quite that soon, unfortunately).

Your body's healing mechanisms are placing layers of calcium down on what they believe is an injured heart valve. They think they're protecting the valve (and you). That's what's making the valve area smaller and the valve less flexible.

Your body and heart have been trained hard, and have learned to deal with shortages of oxygen and performing on a shoestring. Basically, your fitness has enabled your body to adapt to your valve issue.

Unfortunately, your body cannot entirely overcome it. In the end, the restriction will become so great that your heart will not be able to pump enough blood to itself, or continue to force blood through the tiny, unmoving opening. It will convulse and cease. This is one of the "undiagnosed heart ailments" that you sometimes hear young atheletes dying of in the news.

OK, that's a little gruesome for a "welcome" post. However, it is important to realize that Aortic Stenosis causes cruel and deadly progressive damage to your heart. Like having your chain jump the sprocket halfway up a steep hill, being more fit will not prevent it, nor slow down its progression. You can't tough it out.

It can be depressing to address a critical physical failure, especially when you've always been fit, active, and in command of your body. People here have lived that part, too. You can shout "Unfair!" here, and be understood.

Here is the cheap tour of test usages, as I understand them:

The four tests that are generally used for this are the MRA (an MRI of the heart and surrounding area), the TEE or TOE (an echo done through a transducer that is lowered into the throat), Cardiac Catheterization (a transducer and other implements are inserted and snaked up to the heart, usually through the large femoral artery at the groin, and measurements are take from within), and the Echocardiogram (a sonogram taken by placing a transducer against the body), which you are already familiar with.

- The Echocardiogram (ECG) is the easiest to have done, and may be the least expensive. If you have a good echo technician, it can be quite accurate. It is usually not sole evidence for performing surgery. Plus, it cannot discern whether there are blockages in any of the coronary arteries. Most surgeons will do bypasses as a matter of common sense while the chest is open, if there are any blockages present. For that reason, a cardiac catheterization is usually also done before surgery.

- Cardiac Catheterization (cath) is done by an interventional cardiologist, with an anaesthesiologist's assistance and sometimes an xray technologist. You can be anaesthetised from an aware, bare minimum level to a barely responsive level, usually at your discretion. It generally yields slightly different results from an echo, and is considered a basis for surgery, especially in conjunction with the ECG, which usually precedes it. It has the added and critical advantage of allowing xrays of the valve and heart chambers, as well as the coronary arteries, where it can determine blockages. These xray views are possible because of an injected dye that illuminates the passages. Most surgeries are done on the basis of an ECG and a cath.

- TEE (Trans-esophogeal echocardiogram [in the U.K. - TOE: trans-oesophogeal echocardiogram]) is done by the cardiologist or a technician. Usually patients will take calming drugs and an unpleasant-tasting, numbing spray that deadens the gag response. It is not an enjoyable test, but most people do make it through the exam without forcing a halt. TEE is considered more accurate than the standard echo, and possibly more so than the cath. It is also used during the actual operation to allow the surgeon to check his work. A TEE is considered accurate enough to mandate surgery. However, like a standard echo, it cannot check the status of the coronary arteries. As such, a cath is usually also performed before surgery.

- MRA (Magnetic Resonance Angiography) is done in a closed-tube type MRI. Many people take Valium or other calming prescriptions before the test, as there are tight quarters inside the machine. Thoracic MRIs are done, and are then redone after a contrast medium is injected into your arm. MRA technicians believe that their results are extremely accurate and grounds for surgery. While the MRI should be able to view the coronary arteries with the contrast medium, that doesn't seem to be included in most cases, again leaving the requirement for a cath before surgery.

Stenosis generally goes to critical at about 1 cm². There appears to be concensus that, if no symptoms are present, aortic valve replacement is performed at .8 cm² regardless. There are those on this site who have had it performed (as an emergency) at smaller valve areas. Aortic stenosis is considered usually terminal at about .5 cm². Again, with variances between tests, some may have been listed at .5 cm² on an echo, but the valve area may actually show up as larger in the surgeon's final report of the physical valve after removal.

You should determine whether you want to choose the type of valve (tissue or mechanical), and if so, what brand. There are many threads here about valve choice. You should also consider whether you want to choose your surgeon, and/or the facility where you will have your surgery.

Everyone is different, but if your progress is similar to my stenosis, you have some time (months to years) to develop an understanding of the heart issues you face, the types of valves you might want to consider, what actually happens at operation time, and what your recovery may be like.

Probably, you've been gleaning a lot of that from reading the forums already. Use the search feature, and ask about existing threads or start another, as you did here.

Glad to have you aboard.

This, by the way, is a "large, rambling posting."

Best wishes,
 

ALCapshaw2

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Welcome to our world Bob !

To my mind there are TWO conditions that you should monitor CLOSELY (say every 6 months, NOT the annual echo that many Cardiologists like to prescribe).

The #1 criteria for AVR is Aortic Valve Area. Generally surgery is recommended when this is equal or less than 0.8 cm sq. Some surgeons recommend at less than 1.0 cm sq.

The #2 criteria (which is NOT always followed by cardiologists) is ENLARGEMENT of ANY Chamber or thickening of any walls. If this condition goes on too long, there can be PERMANENT DAMAGE to the Heart Muscle(s), often WITHOUT SYMPTOMS. That is why the better Cardiologists and Surgeons recommend surgery even when you 'feel fine'.

Several members of VR.com have had various levels of permanent damage by waiting too long. One particularly fit individual went from NO enlargement to significant enlargement in SIX WEEKS. (Scott ???)

If you want a second opinion, I recommend talking with a Heart SURGEON as they 'get it' about heart enlargement and generally prefer to operate SOONER rather than at the Last Moment. Several other members have had comments from their surgeon that they got in there 'just in time' as the valve was MUCH WORSE than indicated by the various tests. FWIW, the TransEsophageal Echo provides much better images than the simple chest Echo, which often has widely varying results depending on the skill and accuracy of the test technician. A cardiac catheterization prior to surgery is also a good idea.

'AL'
 
M

Mary

Guest
Hi, Bob.
Your story sounds alot like mine. I found VR in April, and the information I've gleaned has greatly improved my mental outlook as I await replacement. I, along with several others, are in a holding pattern in the Waiting Room, but I've learned that the wait can be pleasant when its passed with members who have undergone the same experience and encourage you to talk about your fear and uncertainity.
I'm going out of town this morning, but I will send you a private message later to introduce myself and compare/contrast our circumstances.
Mary
 
B

bobcatrel

Guest
Thanks

Thanks

Thanks to all for your advice. I have a lot of reading to do and this site will be very helpful! Again, thanks to everyone for taking the time to respond.
 
S

Shine_on_Syd

Guest
Bob,
My story is almost identical. I was 53, playing ice hockey with guys 20 years younger than me, running, in-line skating and road biking. I did century bike rides and 26 mile inline skate marathons with sever AI. Except for the discovery of a murmur, I had not idea there was a problem with my aortic valve. I then started having TEEs every 6 months revealing severe regurgitation. The heart is a magnificent machine and compensated for the shortcomings. The things they watched for were EF below 50%, LV diameter, LV wall thickness, water build up in lower legs (edema) and shortness of breath. My docs wanted to delay the surgery as long as possible before I reached the cusp of congestive heart failure. Then you reach the point of no return.
I had only one key symptom before surgery was suggested. That was when my LV went to 8 CM. BTW I jogged 4 miles the day before
 

epstns

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Hi Bob, and welcome to The Waiting Room -- the virtual waiting room in which many of us await the surgeries of the future. I'm in a situation similar to yours -- mid-50's, very active, moderate aortic stenosis. Measurements are quite similar to yours -- valve area about 1.1 sq cm, EF at the high end of normal, etc. I'm a jogger, and have been doing around 20 miles/week for 25 years or so, and my cardio says it helps the heart remain able to compensate for the stenosis -- to a point. What they are especially watching for is any enlargment of the heart's chambers or thickening of the muscle walls (I think Al mentioned this) as this enlargement would be an indication that the heart is running out of capacity for compensating for the stenosis. Maybe it is a result of physical conditioning, but so far my only "symptom" is that I'm more tired earlier in the evening than I used to be. I put that in quotes as the docs don't feel "tired" is a clinical symptom of the importance of shortness of breath, fainting, etc.

I'll agree with the others, get the checks done every 6 months, and keep a close watch.

Again, Welcome.
 
R

Raverlaw

Guest
Bob,

Welcome - you're in the right place!

I won't repeat what the others have said, although I agree with them all. Bob's post is large, but not rambling - he did a good job of summarizing things you need to know.

My own story is posted in various threads here and you might find the old posts by searching. In a nutshell, I was diagnosed with severe aortic stenosis in November, had a cath in December which confirmed, and had my valve replaced February 20. I'm one of the ones the others mentioned: my surgeon said my valve was much worse than they thought from either the stress echo or the cath, and he said it was a miracle I hadn't had a major stroke or died. He definitely said I wouldn't have made it another six months without the surgery.

You're ahead of the curve because you are in good physical shape and know about your condition, but I'd recommend talking with a surgeon and asking if a more invasive test is in order.

Good luck to you and enjoy VR!
 
S

Susan BAV

Guest
Hi Bob and welcome -

A lot of good comments above...

Regarding possible symptoms: following my surgery, there are many odd little things (like strange distorted vision episodes, etc.), "symptoms," that have resolved for me post-op that I hadn't realized, pre-op, were related to the aortic stenosis!

Also, a classic symptom is shortness of breath but, in my mind, I equated that symptom as being defined as something like an asthma episode so I thought I wasn't having it pre-op. But, I WAS having that specific symptom in such a way that I wouldn't have defined it in with those words, "shortness of breath." Another symptom with a long name which I will describe as "passing out," is one which I DID NOT have. I have read, however, that for some with aortic stenosis, the first time that they pass out is when they die from valve failure. That shocked me. I was also having angina upon exertion, but I didn't know that was what it was, at first.

Primarily, I was extremely and progressively fatigued, which came on gradually at first and then became much more pronounced. I went to the doctor a bit over a year ago because I was having arrythmias, which were also becoming much more frequent and even knocking the wind out of me. And the echo that I had then showed red flags. The (so-and-so) cardiologist that I saw then, however, gave me some very wrong medical advice. I began to research my condition and my husband and I decided that I needed to consult a specialist. Three surgeons recommended surgery.

This site was extremely enlightening to me when discovered it and read other's stories. Have you read any of the stories people have posted in the story section?
 

Tony

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Oct 3, 2003
Messages
96
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Warren, Michigan
Hello Bobcatrel,
I think you have received excellent medical advice from previous replies to your initial questions.

I can give my personal experience with my aortic valve.

In 2001 my physician reported regurgitation showed up on an echo of my aortic valve.I did not think to much about it as he reported regurgitation on my mitral valve in 1993 and nothing developed from that. I continued to run (4 or more miles) and swim (1/2 mile) daily.Starting in January 2002 I noticed my time for my 4 mile runs increased from 41 minutes to 43 and 44 minutes. I attributed some of this to age as I was 69 at the time. My doctor continued to monitor my condition. In June 2002 he did another echo, then a catscan. These showed an aneurysm at the aortic valve. The word aneurysm struck terror in me. I replaced running with walking. I was referred to a cardiologist who scheduled a catherization, then followed up with a TEE. These tests indicated that an aortic valve replacement and a single bypass was needed. Surgery was scheduled for the next week, 27 June 2002.

The surgery went easy for me. No pain, some discomfort like when I have the flu. My only problems were a feeling of lightheadedness from weeks 6 to 12, post operation.

My advice is to seek a repair if this is possible, but not to fear a replacement when recommended by your doctors.

Tony :)
 

kentuckyed

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Mar 7, 2015
Messages
5
Location
Louisville, KY
Hey Bob. I'm an ex-engineer. Got laid off in 2010 at 60 yo. Nobody was hiring, especially a 60 yo engineer, so I went to work at Lowes. Several years later they needed back-up truck drivers to satisfy some DOT requirement and I was volunteered. Had to have a DOT physical which required that I have an echo due to a heart murmur which I've had since I was a kid. Failed the physical due to severe aortic stenosis. No symptoms at all. On my feet all day, climbing ladders, moving refrigerators, etc. No problems. The DOT doctor said "Go see your cardiologist." I didn't have one. When I saw one he said you need a new aortic valve ASAP. I inquired about putting the operation off and he essentially said "No skin off my teeth, it's your life, but my recommendation is to have the operation within the next 30 days." Had the operation and all is well.

Your body adjusts and compensates for failing systems. My heart muscle had enlarged in an attempt to keep the blood flowing. Don't trust your body to let you know what the true story is. You have to trust the doctors and the science. keep track of the situation and when it ceases to be moderate get it fixed.
 

vitdoc

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Southern Ca.
The criteria to perform aortic stenosis surgery is when the heart muscle is starting to have potentially irreversible changes. The opening in the valve is correlated with the gradient across the valve. As the gradient increases the heart works harder and the left ventricle wall starts to thicken. The electrocardiogram starts to show a variety of changes and the echocardiogram shows wall thickening. When these changes reach a certain stage surgery is generally recommended.
There is one important caveat. The first "symptom" can be sudden death. Hearts with "strain" can develop arrhythmias such as ventricular tachycardia.
I was aware of my aortic stenosis basically from birth when a loud murmur was heard. I was followed for years as I grew up without any restrictions on my activities. (although I used it as an excuse to get out of some onerous gym activities in high school) When I was 29 I had EKG changes and was catheterized and found to have a high gradient. Surgery was scheduled in a few months. I was in the midst of graduate medical training. While playing basketball in Pauley Pavilion at UCLA I fainted. I was only out a short time got on my bike went home and figured I should not do anything too strenuous until after the surgery in a few months. I was in the hospital and ran into my cardiologist and I mentioned what had happened. He freaked out and pushed up the surgery for a week or two. He didn't want my sudden death on his conscience. I had the surgery and my heart normalized with the wall thickness going back to normal along with the EKG findings. Since then I have had two more open hearts for replacement of the valve and then aortic aneurysm surgery. Still active and bike 100-150 miles/ wk at 72. Now fighting recurrent A. fib..
 

KatherineA

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Like many who have chimed in, I too had no symptoms when I was diagnosed at the “moderate” stage in January 2015. I was 65. I was very active, I had been working with a trainer in a crossfit based program since 2012, at first to loose weight, those last 20 stubborn midlife pounds. I “graduated “ to a CrossFit box gym in 2014. I loved the weights and the variety. Yeah there were lots of things I could not do, but the trainers and others were awesome about my scaling. I thought I was In the best shape of my life when I went for my routine physical in 2015.

I had a new resident for the appointment who was extremely concerned about my murmur. I always knew I had one But if I ever brought it up doctors would dismiss it with a waive when I had no pain, no swelling, no shortness of breath, etc, etc, my first referral to a cardiologist and the diagnosis was simply shocking. My first visit to Cleveland in 2015 fall, I was still like no way,

I continued CrossFit until 2017 January Still nothing as far as symptoms but I went to borderline moderate severe. I dropped CrossFit and stepped up yoga I took yoga teacher traing 500 hours in 2017-2018. Mostly to learn more about breath and to try to connect to my body. I was a Regular yoga practitioner since 2003. I thought I must be missing something here with symptoms.

In late 2018, I assisted my brother in his last weeks of brain cancer. I got very run down. Shingles when I returned home on my upper left arm and armpit area. I felt an odd burning sensation in my left upper chest. GP thought shingles residual. No other Classic heart symptoms

Next visit with Cleveland In Spring 2019 was the pronouncement, into severe. Shortly after that visit I was very susceptible to dust, dirt, breathing issues, could not teach yoga and talk smoothly by August. November I felt a little dizzy from time to time but dismissed it as forgot to eat breakfast, need more sleep, etc. still no classic pain, no swelling in ankles etc.

my December visit, I could tell they were freaked out before they even said maybe you should stay and not go back home to WV tomorrow. 😳. Surgery was scheduled and I recovered, I think well.

now looking back I see the slow progression And decline. But, the body compensated well, and my mind said no way until the very end, despite the yoga. I was lucky my Cleveland Dec 2019 visit was timed perfectly or I might not be sitting her typing
 

caro

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Hi Bob! I have had transthoracic echos every year for many years to monitor my valve. I was always asymptomatic before surgery. Last year, I had my first TEE for a reason unrelated to aortic stenosis. It showed that my AVA was smaller than the transthoracic echo showed. TEE found it to be lower than 1.0. It also showed that I had a unicuspid valve. Everything else in test results were normal, no enlargement. Met with first surgeon after that test and he said to wait until symptoms. Met with another surgeon at Cleveland Clinic and he had me do a stress echo. I “successfully” completed it but my peak and mean gradients were very high. That surgeon said to replace in 3-4 months after those results. Stress echo seems to be a good way to find out how the heart is handling BAV or unicuspid valve. Wish you all the best!
 
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