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Billdean

I'm another newbie who's probably facing surgery within the next year. I'm particulary interested in any advice on how best to access echocardiogram results and the clear view of my cardiologist - and it sounds like this is the normal routine - that I should try to hang on to my valve for as long as possible.
A short history: I'm 51 and have known that I had a bicuspid valve for the last 20 years at least. About 6 years ago, my primary care physician thought the murmur sounded different, so I was sent for an echo and it was discovered that stenosis had begun and was already moderate.
Things remained fairly stable until December, when I hit the magic. 1.0-centimeter mark. As a result of that, my cardiologist has me do a nuclear stress test in January, on which I did 100% for my age and no sign of blockage or symptoms. I had another echo on Friday that found me at .95, though that was a result of a repeated test, as the first one showed my valve actually improving from the last one.
I'm now scheduled to go to a hospital setting for my next echo in November. And my cardiologist seems in absolutely no hurry to get this done. I also have no desire to go through it - but also don't want to incur an undue risk or begin to be symptomatic.
Any thoughts would be welcome - and specifically any experiences from people who also had pre-surgery nuclear stress tests and whether they were actually useful or accurate.
thanks - and glad you folks are out here.

Bill
 
I'm not sure I understand your statement that "you don't want to go through it" Do you mean the echo? or the surgery?

A regular echocardiogram is a nothing test from the patient's point of view. It's a sonogram. Noninvasive. takes 30 minutes. wipe the goop off your skin and get dressed.

A trans esophogeal echo (TEE, or TOE for the Brits on the board), on the other hand, is a bit more stressful. You get to go NPO for at least 12 hours prior, get really nasty crap sprayed in your throat to hopefully numb you, you get nice happy drugs for twilight sleep, and they drop the sonogram down your throat to the esophogas for a real nice sonogram of your valve. Up close and personal. You'll have a sore throat the rest of the night, but you'll sleep it off - use some throat spray, no aspirin, advil, tylenol afterwards for the owies. It's a better picture than the standard echo. A day off work. you are fine the next day.

I dunno nothing about nuclear stress tests.

If you were symptomatic, you'd probably know it: short of breath (like you can't really inflate your lungs all the way), getting out of breath with exertion, maybe a cough, dizziness, stuff like that. I'm getting symptomatic, and I know it! I'm not yet scheduled for surgery, but will have my 3rd echo in 7 months on July 20 because of my increasing symptoms. Was originally scheduled for October, after the May one, but started getting SOB, "wet" lungs, and coughing. Of course, I have Aortic insufficiency, which is a bit different than stenosis.

As for the surgery, been there, done that with the mitral, am not looking forward to the repeat on my aortic, but am looking forward to being on the other side of it, once again, and to stop feeling like I'm waiting for the other shoe to drop.
 
Hi Bill, and welcome.

You can get your echo results by requesting them from the office where they were performed. They have to provide them; it's the law. And honestly, it's no big deal. Patients ask for results all the time. The echo report will also state the cardio's opinion concerning his interpretation of the echo.

I had a nuclear stress test about 6 weeks--four years post-op. They wanted to check for the possibility of a blockage and see how my heart fared during exercise. No blockage and I scored "fair" on exercise tolerance. The echo results were similar to what I've had with a 2-D.

We've had several members report no symptoms almost right up until the day of surgery. The decision on when to operate is based on #'s with symptoms and #'s without symptoms. I was throwing flecks of calcification from the valve, resulting in TIAs, which was a determining factor in the decision to go ahead and operate.

Keep reading and asking questions. Someone will have an answer. Can't guarantee it will be accurate, but you'll get an answer!;)
 
Hi Bill, welcome to the forum. I'm also a newbie having joined a few days ago but my AVR is scheduled for this Thursday. All I can tell you is my echos have been bad for 5 years now and I have had no real symptoms until now. I had catheterization 4 years ago which was in complete contrast to the poor numbers the echo showed. My cardiologist said that's often the case with AS. Well my last echo in April showed significant change for the worse so I had another cath 2 weeks ago and my valve measured 7.2 which indicates it's time to replace. I was told my echo was .05 which is now considered severe AS. I still don't have any real symptoms unless I push on the treadmill and then I get chest pain, dizziness and jaw pain. I get shortness of breath climbing stairs but attributed that to old age (I'm 58) - cardiologist said no, no, no - you are not old and shouldn't be getting shortness of breath climbing stairs. He explained to me today that I am very lucky to have caught this in this window of opportunity where they can correct it with no damage to my heart. He's seen far too many people put it off because they have no symptoms and then boom, they are beyond help. The cath did show calcification of the valve also as Mary had. They tell me I will notice a huge difference after I recuperate and have promised that I'll feel "35" again!

Keep asking your questions here because the folks on this site are amazingly well informed. They've been there and have been so helpful preparing me for my surgery this week. Good luck and come here with all your questions.
 
There are numerous postings, mostly by me on the soapbox on this love of cardiologists for the so-called stress tests. Each type has its different twists, but they're all basically the same thing.

Do you have Aortic Stenosis? When the American Heart Assn and the American College of Cardiologists have this to say regarding stress testd for those with AS:
Stress Tests and ACC/AHA Guidelines
________________________________________

"Exercise testing in adults with AS has been discouraged largely because of concerns about safety. Furthermore, when used to assess the presence or absence of CAD, the test has limited diagnostic accuracy. Presumably, this is due to the presence of an abnormal baseline ECG, LV hypertrophy, and limited coronary flow reserve. Certainly, exercise testing should not be performed in symptomatic patients."
Click to expand...
The quote is from the American College of Cardiology Foundation (ACC) Site, http://www.acc.org/clinical/guidelines/valvular/jac5929fla16.htm#A4 "ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease" and is found in "4. Management of the Asymptomatic Patient," under "a. Initial Evaluation," third paragraph.

Here's the link to those ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease, also available through Ross's "Must-Have Reference Links" in the Reference Sources Forum: http://www.acc.org/clinical/guidelines/valvular/jac5929fla16.htm

I've refused them in the past. I don't see the value of them in most of the circumstances they're called for. They would seem best in determining abnormal rhythms and abnormal heart muscle responses. They don't work for determining arterial plaque danger (ask former President Clinton). They are not recommended (see above) for symptomaic patients with AS.

Best wishes,
 
Did you really mean to say "ACCESS" your echocardiogram records (i.e. get a copy)

or did you mean to say "ASSESS" (i.e. Interpret) your echocardiogram records?

FYI, many Cardiologists / Surgeons use 0.8 SQUARE CM (measurement of Valve AREA) as their 'Trigger' for recommending Aortic Valve Replacement Surgery.
 
Hi Bill, and welcome to the forum. I had a nuclear stress test recently myself. They are sometimes useful according to the ACC/AHA, if controversial here. Bob's (Tobagotwo) quote above is incomplete. Here is the full paragraph from the ACC/AHA guidelines for the management of patients with lheart disease:

Exercise testing in adults with AS has been discouraged largely because of concerns about safety. Furthermore, when used to assess the presence or absence of coronary artery disease (CAD), the test has limited diagnostic accuracy. Certainly, exercise testing should not be performed in symptomatic patients. However, in asymptomatic patients, exercise testing is safe and may provide information not uncovered during the initial clinical evaluation. Exercise testing in asymptomatic patients should be performed only under the supervision of an experienced physician, with close monitoring of blood pressure and the ECG. Such testing can identify patients who have a limited exercise capacity or even exercise-induced symptoms despite a negative medical history. An abnormal hemodynamic response (eg, hypotension) in a patient with severe AS is sufficient reason to consider AVR.
Click to expand...

Source: http://www.circ.ahajournals.org/cgi/content/full/98/18/1949

3.1.4.2. Exercise Testing
Class IIb
Exercise testing in asymptomatic patients with AS may
be considered to elicit exercise-induced symptoms and
abnormal blood pressure responses. (Level of Evidence: B)
Click to expand...

Source: http://www.scahq.org/sca3/VHDFullText.pdf (ACC/AHA 2006)

I believe my stress test was useful in that my cardiologist now believes that the symptoms that I am experiencing are related to AS (aortic stenosis), not CAD (coronary artery disease.)

Since you are BAV (you have bicuspid aortic valve disease), you need also to be concerned about the condition of your aorta. People with BAV often have dilated aortas/aneurysms. So when you get your echo results look for the numbers on the aorta and post them here. Have a look at the "stickys" in the Bicuspid Aortic valve forum and check out the Bicuspid Aortic Valve Foundation's web site.

Good luck,

Jim
 
Actually, a quote is a quote, not an entire document. There is no such thing as an "incomplete" quote.

And the quote that I placed was a complete thought that did not require the rest of the paragraph's contents in order to be absolutely true and to state the correct and accurate intent of the writer. The quote was about symptomatic AS patients. What is added above is not about symptomatic AS patients, and is not what I was posting about.

If I were trying to avoid or not disclose information, I would not have been careful to include both general and specific links to the source. Links for any interested (including yourself) to follow.

What I quoted and what I stated are neither incorrect nor incomplete.
 
Thanks to all

Thanks to all

Thanks for all the helpful posts folks - and just reading the board has answered some of my questions. Sounds like I'm at a very familiar place to all of you - torn between wanting to get this replacement done and following my cardiologist's advice that you want to hang on to your valve as long as you can.
 
This would be a good time to start interviewing Surgeons so that you have someone you trust Lined Up for WHEN (Not IF) the time comes to replace your Aortic Valve.

It would be in your best interest to find a Surgeon with Lots of Experience dealing with BAV and who knows how to recognize and treat Connective Tissue Disorders (of the Aorta) so that you will have someone who can deal with Any and All possibilities the First Time.

As has been said many times, Surgery of the Aorta is Above and Beyond "mere Valve Replacement Surgery". It would probably be best to look at the Bigger Heart Surgery Hospitals that do a Lot of Valve and Aneurism Repairs / Replacements. Experience Counts !

Remember, one of our favorite expressions is
"The Worse Things Get, the Faster They Get Worse".
This is especially true for the Aortic Valve.
 
You're entirely welcome to your views as well, but not by being dismissive or implying that what was posted was misleading. That is what I see in the statement: "Bob's (Tobagotwo) quote above is incomplete..," which implies it’s being followed by a correction of some sort. It is instead followed by a part of the paragraph that deals with asymptomatic patients, a different group.

As far as determining whether you have CAD, the best doctors in the best facility in the US couldn't find heart disease in Bill Clinton. Two weeks later, he was in the hospital having emergency bypass surgery. And that's hardly an unusual event. Stress tests are demonstrably unreliable at determining CAD. That's why a cardiac catheterization is almost always required before open heart surgery, and a stress test is never required.

Why do they bother to do stress tests specifically for this purpose, when an entirely noninvasive MRA (magentic resonance angiogram) will determine CAD with incredible accuracy and no danger to the patient? Note that the doctor is present at a stress test, so he and his nurse and his tech are getting paid, whereas the doctor isn't required for an MRA.

Of course, there's another issue: who is asymptomatic?

When someone has an aortic aperture below 1 cm², they are legitimate for valve surgery. So, is it more likely that they are actually asymptomatic, or that they just don't recognize the symptoms that they have?

We've often had people post that they didn't realize they had been symptomatic until after they had surgery and could feel the difference. Or that they were tired a lot or short of breath sometimes, but had thought it was just from getting older or putting on some weight. Lots of people don't recognize when they're feeling angina, because they think it's like someone clutching their chest in pain, and only happens after exercising.

Based on postings here, a lot of people don't know when they have symptoms, and neither do their cardiologists. Certainly I can't tell. Plus, a lot of folks tell us that their cardiologists appear to ignore symptoms even when they do mention them.

Most valve symptoms creep up very gradually on their owners, like general fatigue, shortness of breath, a slightly tight or uncomfortable feeling in the throat or jaw (often when not exercising at all). They don't appear suddenly, like a cough or fever with flu. They are tiny extensions of the way the person felt the day before, often easily ignored as being out of shape, getting older, muscle aches, acid stomach, even a perception that they always felt that way, because the point to compare to was literally years before.

Patients are traditionally the worst at recognizing their own symptoms, although they are of necessity the main source of this information. They rarely find balance with their symptoms, as they're too close for perspective, and so they tend to either imagine more of them than exist or doggedly ignore the ones that they have.

So, the real question may be whether the patient or the cardiologist really knows if the patient is symptomatic, rather than which facility to have the stress test done in.

Best wishes,
 
tobagotwo said:
You're entirely welcome to your views as well, but not by being dismissive or implying that what was posted was misleading. That is what I see in the statement: "Bob's (Tobagotwo) quote above is incomplete..," \,
Click to expand...

Bob, you quoted two sentences from a full paragraph to back up your personal bias against exercise testing. That's what is known as taking something out of context. It would have been better if you had quoted the entire paragraph, and let the reader decide for themselves. The person who initated this thread, Bill, implied that he is asymtomatic. The ACC/AHA guildelines clearly provide for the use of exercise testing for asymptomatic patients with AS. Your post was misleading. My intent is to present accurately what is in the guidelines.

Exercise tests can be useful for more than merely diagnosing CAD. Again, referring to the ACC/AHA guidelines:

Exercise testing in asymptomatic patients with AS may
be considered to elicit exercise-induced symptoms and
abnormal blood pressure responses.
Click to expand...

I do agree that what is "symptomatic" to cardiologists is a subjective matter.

Best wishes,

Jim
 
Hi Bill and welcome to the zoo:D .... As you can see, there is a lot of information here ... and as you can see some are ?passionate? about their views and can get a bit testy but they will be ok and I?m sure you will be too......:)
 
Billdean said:
Thanks for all the helpful posts folks - and just reading the board has answered some of my questions. Sounds like I'm at a very familiar place to all of you - torn between wanting to get this replacement done and following my cardiologist's advice that you want to hang on to your valve as long as you can.
Click to expand...

Bill ... it is always good to listen to your ?doctors? .... some of us were in the waiting room a short time and some are still there and have been for some time .... I was told by my ?cardio? and my ?PCP? that the time for surgery is before symptoms and permanent damage... good luck:)
 
I did have symptoms but was in denial. My cardio had to use my echos as reference since I denied and/or was not aware of what was a "real" symptom. When I was scheduled for a dobutamine stress test, the cardio doctor came in, looked at my pre-test echo on the monitor, and stopped the test. When I asked what was going on, she said bluntly, "if you take this test there is a good chance that you could die."
She then proceeded to forbid me from driving, etc.
I was back at the surgeon's office within a couple of weeks. My AVA was .8
 
For what its worth, I knew about my BAV for 15 years before the surgery. Symptom: chest pain. Got an echo and was diagnosed as "BAV with mild aortic stenosis, no restrictions on exercise" in 1992. Went back for another echo in 2000 due to chest pain. Same diagnosis as in 1992. And I exercised. A lot. A lot of cardiovascular exercise. Then it got worse in 2007. A lot worse. So I got my third echo in 2007, followed by a cardiac catheterization, and then the surgery. Also for what its worth I've never had a stress test of any kind - ever. Good luck.

http://www.youtube.com/watch?v=SzlpTRNIAvc
 
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