age of BAV replacement surgery

[Karen]

My cardiologist said something last visit that I found interesting. In commenting how "surprisingly well" I was doing, he said that, just as it is a "law" that people need eyeglasses for reading by age 50, it's unusual to get to age 60 without needing aortic valve surgery in patients with congenital bicuspid aortic valves. He had just admitted a 45-year-old patient for valve replacement surgery that week.

I'm curious... Of those of you who were born with bicuspid aortic valves and have had aortic valve replacement surgery, how old were you when you had the surgery? It seems a little odd to ask such a question, I suppose. But in this forum, I sense that some questions are okay here (for example, how OLD are YOU?) that you wouldn't ask in your normal social gathering.

Also, I've read many of you detailing specific numbers and findings from the various tests that you've had done -- specifically the echo tests. Tell me what value or number I would want to know from my own echos. There is so much that is measured. Is the size of the opening of the aortic valve a fairly reliable measurement in and of itself? I understand that 1.2 cm measurement would be considered mild and anything in the neighborhood of .8 cm is critical. I have been told only that I have "mild" stenosis in the aortic valve -- no precise numbers. But it would seem reasonable to know exactly what the numbers are -- unless the results can seem "skewed" because of various factors such as differences in the measurements done by the sonographer etc.? Or are these tests pretty uniform in the results you would get from one sonographer to the next?

I've asked too many questions perhaps. I appreciate your help in getting better educated on these matters! I look forward your enlightened responses...

Karen

 

[Randy'38]

My Data

My Data

Karen:

I was 55 when the aortic stenosis (calcification) was discovered. They didn't realize I had a bicuspid valve at that time. My valve x-section was 1.4 cm2. I monitored the condition bi-annually for several years, then annually, and finally semi-annually. By March 2004, I was down to 0.7 cm2 and having symptoms. By that time my ascending aorta was dilated (5.0 cm), and my cardiologist recommended surgery. I had the surgery in July 2004. It was only after they went in that they discovered my aortic valve was bicuspid (I was 65 at the time). It was so heavily calcified they couldn't tell from the echo. In the meantime, my left ventricle wall was mildly hypertrophic from all that pumping (I was always athletic, and still playing singles tennis right up until the decision to have surgery). I had a bovine tissue pericardial valve installed and a patch put over the ascending aorta aneurysm. I was back playing tennis by October. Hope this helps answer some of your questions.

Randy

 

[perrybucsdad]

I was 28 when I had my BAV replaced. I also had an aortic aneurysm so a root replacement was done as well. Also, when I was 8, I had a CoArt repair done.

 

[Baldrick]

I was just shy of 5 when I had my repair (already old enough to remember, unfortunately). The repair, although a bit crude, outlasted all expectations and lasted nearly 29 years until I had the replacement at age 33.

 

[JimL]

My congenital bicuspid was replaced at age 46. I had thought that the aortic valve opening was down to .1 before surgery, but my wife reminded me that the surgeon said it was completely calcified shut when he opened me up. It's definitely better not to wait so long.

 

[terryj]

My husbands BAV was replaced at age 51. He had no real symptons except his blood pressure suddenly starting getting higher. He went to PCP,cardio,had echo and cath and then surgery.

 

[CCRN]

Numbers

Numbers

I was about 32 or 33 years old when my GYN heard a murmur. It was also heard on a flight physical so my GYN sent me for an echo and I was thus diagnosed.

In January I was "politely" informed by my cardiologist that my peak gradient was 85, mean gradient 51 and my AVA (opening) was 0.8......a change from peak of 56 with mean in the 30s and AVA of 0.9. AND, according to research 80% of persons with my "numbers" go into heart failure in 18-24 months. I screamed right there in the office. I am 45 years old. Absolutely nothing else was abnormal on the echo. Been restricted to walking and no lifting more than 40 lbs.

My next echo is set for May 25th and I guess you could say I'm a member of the waiting room crew, however a couple of the CT surgeons I work with seem to think I won't be waiting long. The only symptoms I have had to this point in visual disturbances and a little "TIA" two years ago. Here lately I've been getting a feeling of fullness in my chest about the upper part of my sternum. Could that be anxiety? Don't know.....I'm a little paranoid at this point.

 

[Karen]

anxiety -- yes to that

anxiety -- yes to that

CCRN

I appreciated your response -- and the others. I still am not clear about what specific numbers I need to get a hold on. But I think I'm getting it sorted through.

As for the anxiety... Your "numbers" and the seriousness of the situation you are facing with so few warning signs or symptoms would be more than enough to give you anxiety...

A year ago, I had no symptoms that couldn't be explained by the costochondritis diagnosis UNTIL I started having tests on my heart, and then being told that there was a problem. In one of my visits with my PCP, I expressed concern about the fulness in my chest and the racing of my heart etc. I would regularly wake up in the middle of the night with it. He said we could do more tests -- an angiogram -- simply for my own reassurance. (I had ST segment depression in the Thallium treadmill test, which was one thing that would warrant doing the test anyway). But he assured me that my symptoms were very real, but not necessarily due to physical causes. The chest pains (arthritis stuff) made it easy for me to stay keyed up about all this other new information. It has taken a year (and tests that have been pretty reassuring) for me to get back to "normal." (Although, normal is a little different now. Even believing and hoping surgery is a long way down the road, it's easy to appreciate from the stories on this site, that the situation can change quickly. Just having these issues on the back burner changes things a bit, huh?)

So whether you are a CCRN or not, you're not immune from what I believe are very real emotional swings and feelings of anxiety. You're not a textbook case. It gets very personal and frightening. I'm sure that's especially the case when the situation appears more imminent.

On the other hand, those are also symptoms that the cardiologist would be looking for, so it may be entirely related to the condition of your heart. I think the biggest cause of anxiety is NOT knowing what you're dealing with...

Good wishes to you as you sort it all out...

Karen

 

[MarkU]

I was 5 when my murmur was first noticed, had my first catherization & BAV diagnosis at 15, became symptomatic at 46, and had my AVR surgery at 47.

I lived most of my life with the expectation of someday having surgery. That and the fact that my grandfather died at 54 from "heart problems" put me in a pretty gray state of mind during my late teens - the knowledge of my heart problems just seemed to compound my normal teenage angst and lack of self-esteem. I worried about dying young and at one point even pondered whether or not I should marry or have a family.
Somehow I made it through with the support of family and faith. I've had a lot of good things happen in my life and am thankful for them. My surgery went well and today I feel fine physically, but I still find that I must fight off occasional bouts of depression.
Mark

 

[PapaHappyStar]

My bicuspid valve was discovered six months before surgery by accident, my son had a bad cold and we went to get him looked at, my wife told me to go to the walk in urgent care because I had a minor cold as well -- I guess I must have been feeling something ( or maybe just to get her off my back ) I saw the oncall physician -- learned I had a heart murmur, had an echo a month later which showed a bicuspid aortic valve with moderate stenosis (1.1cm^2) -- three months later had another echo for a second opinion -- the stenosis was severe at 0.6cm^2. This was checked with a cath ( and an MRI a month later ).

It is likely that my first echo was mismeasured, the doppler ultrasound probe has to be at the correct angle to the blood flow for an accurate reading -- I think they do it by pressing the probe into the throat area and trying to get the tip "front on" (parallel) to the aorta -- without having any hands on experience with echo technique, I could still see why this would be prone to operator error and would vary with patient anatomy.

I think its better to look at "numbers" in an indicative way and correlate them to symptoms.

Here is my algorithm to decide on surgery -- go in for multiple tests and opinions if you are nearing moderate in your chart of severity even if you are not symptomatic ... and if you are confident of the lab which performed the tests and the measurement is not obviously off: take the measurement which shown the worst disease and base your surgery decision on that.

Here is cleveland clinic's web page on Aortic Valve Disease -- they have a table of severity based on valve area:

http://www.clevelandclinicmeded.com/diseasemanagement/cardiology/aortic_valve/aortic_valve.htm

Patients with (predominant) aortic stenosis fall into one of four categories of severity:

1. valve area > 1.2 cm2??????????.mild
2. valve area 1.0 to 1.2 cm2????????.moderate
3. valve area 0.8 to 1.0 cm2????????.severe
4. valve area < 0.8 cm2??????????.critical

Asymptomatic patients with mild to moderate aortic stenosis should have medical follow-up with regular inquiry as to changes in exercise tolerance or other symptoms. Serial echocardiographic examination should be based on an understanding of the natural history of the lesion, as outlined below. Patients should avoid strenuous activity, and particularly avoid post-prandial exertion. Infective endocarditis precautions following American Heart Association guidelines must be emphasized at each visit.4

"post-prandial" means after meals....

 

[epstns]

Hi, Karen!
I'm out here in The Waiting Room with you. My "probable" BAV was diagnosed along with aortic stenosis about 3 years ago, at age 54. Murmur was discovered in a routine physical. No mention of murmur prior to that. Subsequent serial echo's have shown my valve area to have progressed from 1.1 sq cm down to about 1.0, thus my current diagnosis is "moderate to severe." We are watching the valve area statistic, and also watching left ventricular size -- if enlargement begins to occur, that is one indicator for surgery. The other that we watch, of course, is the valve area.

My cardio and I also are carefully monitoring my exercise tolerance (currnetly jogging 20 miles/week at about a 9 minute pace per mile). If this changes significantly, I would call the doc.

So, I can't tell you my age at surgery -- just that we are currently guessing that I'll be somewhere around 61 or 62, but it could be sooner or later. . .

 

[tommy]

But in this forum, I sense that some questions are okay here (for example, how OLD are YOU?) that you wouldn't ask in your normal social gathering.

Karen, in here, old age is a badge of honor (although at 50, I don't consider myself "old" )

I was 30 when BAV was discovered due to sub-acute bacterial endocarditis . Until that time, I had not symptoms, and no murmur (at least several doctors never heard it). If I had not had SBE, would I eventually had stenosis and required AVR anyway? Who knows, but I doubt it. I went 16 more years with significant damage before AVR. Without the SBE, I believe that my valve would have lasted to age 60 and beyond.

I've asked too many questions perhaps. I appreciate your help in getting better educated on these matters! I look forward your enlightened responses...

Ask all you want. That's what we're here for. Of course we can't always guarantee "enlightened responses".

 

[Old clicker]

I was 49 when I had mine replaced.

 

[BIGHEARTED]

I thought I was alone in all this

I thought I was alone in all this

Hi Karen and others - I can't tell you how much reading the previous thread has helped me. I was diagnosed with an aortic aneurysm 4 years ago at age 50. I had severe chest pains while on vacation and had a nuclear stress test when I got home. I was taken off the treadmill almost immediately and then scheduled for a heart cath. The doctor that did the heart cath never even mentioned to me that I had the aneurysm or a bicuspid valve, told me to go home and he would send the report to my PCP. About a month later at a routine visit my PCP asked me what I was doing about it. I was totally shocked. I went to a different local cardio and a cat scan showed my aneurysm measured 4.8. He then referred me to the Cleveland Clinic. My first MRI measured 4.6 and the cardio explained that the difference was because of the difference in how each test measured the aneurysm. At that time they told me if my aneurysm remained stable they wanted me to wait 15 years so they could replace the BAV and fix the aneurysm at the same time. Last week I had my annual check up and although my aneurysm is still stable my valve is now at .9 and considered severe. My cardio told me I may not be able to wait too much longer for surgery. I go back next year for my annual visit, unless the symptoms get a lot worse. I too have that heavy feeling in my upper chest and thought it was anxiety. I also get sharp stabbing pains once in awhile and feel dizzy. And my symptoms are much worse if I go for a walk after dinner. Thank you PapaHappyStar for telling me what post-prandial means. Now I will wait before exercising after dinner. Before coming to this site I was totally in the dark and thought I was all alone in what I am feeling and going through. Thank you all for sharing your knowledge. Leny

 

[chilihead]

I was diagnosed with a murmur at 37 and had a Ross Procedure done at 40. I was mountain biking up until the weekend before the surgery!

 

[CCRN]

Nice to be understood

Nice to be understood

Karen

I am satisfied with my medical followups. You see, I hold certifications in both critical care and operating room. I work every day with cardiothoracic surgeons. I take care of open heart patients and participate in the same procedure I will have in the near future week in and week out. I have seen many people through the process from admittance to discharge.

I have great confidence in my peers, surgeons and anesthesiologists. The same people I work with every day will be taking care of me. I have the makings of a great outcome in my treatment. I am thankful. But all this has not lessened my great anxiety about my situation. I worry about the burden my team will take on when I have my surgery. I know my situation has come as a shock to them as well. I never expected to have to face lying on one of the same tables I have assisted numerous patients. Don't get me wrong, we are concerned about everyone who enters our operating room suites. It's just a little difficult when it's someone we know.

This site has been great in that I know I really am not alone with this bomb I have ticking in my chest. You see, after all, nurses are regular people too.

 

[Raverlaw]

I was 49, and had only been really symptomatic for less than a year. My valve are measured at .6 cm/2. The doc said anything under 1.0 was cause for concern.

You're not alone in this-