Curious conversation with my Cardiologist -- feedback welcome...

[Martin]

As mentioned in a previous post, in my most recent echocardiogram I was shown to have an aortic valve opening of .7cm2. I was expecting this to be the trigger for scheduling valve replacement surgery. My cardiologist was less ready to make this assessment. He felt that with a gradient reading of 36, I could wait another 6 months for the next cardiogram and that I could possibly even put off surgery for as long as 2 - 5 more years. This surprised me, and I told him that I wasn't sure that I wanted to remain in limbo for that long a period of time (I'm still asymptomatic.)

His response was that I should not look at AVR surgery as elective surgery. He felt that my best day post-surgery would not be better than my average day now (pre-surgery). His comment was not to think of it in terms of eliminating a disease (aortic stenosis); but rather, that I would be trading one disease (AS) for another -- a foreign valve in my system, with all the setbacks that that could entail. The longer I can hold off surgery, the more options for technological and medical improvements, he felt.

I'm not sure how I feel about this. On one hand, I don't particularly want to have surgery any sooner than I need to; on the other hand, I don't want to wait too long. I'd like to hear from those of you who have had AVR, and find out if you consider that the quality of your life improved after surgery. Thanks for your responses.

Martin

 

[ALCapshaw2]

Ask him what he wants you to wait for (such as a New Valve). Then ask him how many such valves he would want to know were implanted in other patients, and for how long, before deciding that Maybe you would go with that new valve.

You might also want to ask him how long he thinks it would take for the FDA to Approve a New Valve for use in patients in the USA. FYI, the On-X Valves were introduced to the World Market in 1996. They were not approved for use in the USA until 2001 and some Surgeons still tell patients that they are "too new" or "too untried" even though there are now around 100,000 in use around the world.

You should also know that Aortic Stenosis can progress rapidly. We have a saying that goes:
The Worse it Gets, the Faster it gets Worse.

Several of our members have had Cardiologists tell them they could get 2 to 5 more years out of their valves only to need surgery in a year or less. Some of those patients were told their valves literally disintegrated in the surgeon's hand.

Yes, I am a believer in the "Sooner is Better" philosophy, especially for Aortic Stenosis.
I also believe that Symptoms are a sign that Damage is being (or already has been) done to the Heart.
Many (most?) Surgeons prefer to operate Before there is Permanent Damage to the Heart muscles and walls.

One more comment. My Cardio and Surgeon used an aortic valve area of 0.8 sq cm as their 'trigger' for recommending AVR.

My recommendation is to get a second opinion and make it from a Surgeon who has experience doing the type of surgery you will need.
I disagree with your Cardiologist's comment that your post-surgery outcome would be worse than your current condition. That is NOT the usual outcome, especially when surgery is performed BEFORE Permanent Damage is done to the heart. WAITING TOO LONG could result in the situation your Cardiologist is warning you about.

Personally, I am of the opinion that Surgeons have a better 'feel' for Valve Issues and timing of surgery.
IMO, Good Surgeons do not 'rush' their patients into surgery before it is really needed.
Again, I recommend that get an opinion from a Good Surgeon.

'AL Capshaw'

 

[Ross]

I fully agree that you should be spared the surgery as long as possible, but I'm afraid your there now. I would get a second opinion or that of a Surgeon. Cardio's love to wait too long and Surgeons would much rather have at it before damage is occuring.

 

[epstns]

I don't mean to start a "competitive discussion" here, but some cardio's are very cautious about when to recommend surgery. Many of them subscribe to the theory that when symptoms begin is the time to begin discussing surgery. I don't fully agree with this, but on the other hand, I also do not agree with scheduling surgery simply "by the numbers." Every patient is different, so some people may experience pre-symptoms at a valve opening of 1.0 cm, while others may not experience any negative impact until far later.

For my own case, I am watching the echo's carefully. At the first sign of any of the dimensions going toward the limits of normal, we will start scheduling. In the mean time, my valve area is just less than 1 sq cm, and I have none of the "cardinal" symptoms (SOB, syncope, angina), so we wait. I have agreed with my cardio, however, that on my next visit we will begin the discussion of strategy for surgery, surgeon referrals, etc.

Each case is different. Hopefully you have a cardio you trust, then just trust them.

 

[vtbecca]

I know the aortic valve is different, but we had this issue w/ my son when he needed a new valved pulmonary conduit. He had a cath, the cath doc felt that we should schedule surgery w/in 3 months so we did. Gabe was asymptomatic at that point. We went for surgery and were turned away. They told us he was too healthy after his pre op visit (age 14 months). The surgeon said he hoped to get a year or more before replacement, thus possibly saving a surgery in the long run. I completely missed his symptoms, his naps got longer, he started falling asleep at some meals (he was very active and it was the hot summer), and at age 16 months he started sweating profusely. I immediately called the PC and within 2 weeks he had his surgery. He was breathless going up stairs, napping 5-6 hours a day, and sweating. I really wished they had just done it earlier when the numbers showed it was needed. When waiting you run the risk of damaging the heart. We are thankful he was OK but having just 2 weeks between appointment and surgery was crazy. They thought he would go longer but there really is NO way to predict. I think if you don't feel right about it talk with another cardiologist or surgeon. Sure there may be new innovations but as others have said it is many years before they go through the FDA approval process. Good luck, trust your instincts and remember that YOU are the patient!

Becca

 

[Luckyguy17]

martin,

Kind of been there, done that...although in my case i was reticent and cardiologist has been encouraging for several months now...but i was in denial

Was at .5cm2 diagnosed in march and current am slightly overdue and am not sure where i was last fall on that echo and should be in for surgery in a few days (hoping)

Although diagnosed as severe and confirmed early April, still took 2 months+ to schedule surgery and belive you would rather walk into hospital for surgery

For you, am thinking 6 months to next tests, may be too far, any chance of meeting another cardiologist, for 2nd opinion, to at least set your mind at ease?

all the best

Gil

 

[Bill B]

I am a case study for what AL says. My valve went downhill very quickly as my cardiologist was advocating the traditional "watch and wait" for symptoms while admitting there was growing support for operating BEFORE symptoms to avoid permanent heart damage. In her experience she had many patients who had gone many years more or less stable. I wasn't one of them. Although it was just numbers, I knew the numbers were BAD and changing rapidly. I was lucky enough to get 3 echos in less than a year and see the rapid progression. To sit there thinking that somehow this was going to stabilize and not continue to get worse seemed unreasonable, so I went ahead with the operation before something real bad happened. I would look at your "numbers" and try to get a feel for the condition of your heart over all, such as the ejection fraction, size of the left ventricle and other chambers, wall thickness, evidence of abnormal wall motion and other signs the heart is struggling. A mean gradient of 36 may not be a signal for surgery, but it is still very abnormal. Anything over 40 and peak of 70 is very bad. Sure, many people wait and appear to do well. I've seen some people here who tolerate SOB and dizziness for years before having surgery. Then there are those who have an acute incident and end up getting shoved into surgery almost overnight. I really didn't want to be either of those. I spent some time wondering why I had no demonstrable symptoms, but decided that risking my health because we could not answer that question was not a good idea. So, the caveat here is that I had evidence of rapid progression, even if it was just numbers. You may not. It's a balancing act of numbers and symptoms, with the possibility that they could diverge as in my case. Your cardiologist may be right on-track, but that is something I would recommend you try to clarify. In my case, I arranged for a surgical consult on my own, mostly for academic purposes (I just wanted to better understand my eventual surgical options). The surgeon saw my worsening numbers and other signs on echo and sounded a different alarm than my cardiologist. I had a choice to make as to which way to go. The choice for me was easy - surgery and a new cardiologist for follow-up care.

 

[Jeanie]

You need a new cardiologist, yesterday. Definitely find one, and then get a referral to a surgeon.

 

[Bina]

Martin, if your EVA is .7 cm, you probably don't have 2 years to wait. Book a consult with a surgeon or another cardio.

 

[Superbob]

Martin, I had the opposite -- a cardiologist who was very proactive. In fact, he was recommending surgery a little before my great surgeon concurred with him. And I am very grateful he was on top of things and getting me to where I needed to be.

I don't know if your cardio is right or not, but I would strongly recommend getting a second opinion, and possibly a different cardiologist after you've had a chance to weigh the recommendations. Keep us posted!

 

[Philip B]

One disease for another?

One disease for another?

Al pretty much covered what I would've posted in response to your post. Visiting with someone who respond with a more proactive approach wouldn't be a bad thing.

Opinions may vary, but I've never ever considered AVR surgery in the context of trading on disease for another. Considering a replacement valve as some kind of disease seems to me to be something of a stretch.

When my cardiologist told me that I needed surgery, my insurance company took the stance that the surgery was elective. I guess company representatives wanted me to wait until my 5.8 cm aortic aneuryism blew before the surgery would be considered necessary. I'm glad my cardio doc and surgeon preferred a more proactive approach.

-Philip

 

[tobagotwo]

The number that surgery can be performed at without fear of professional repercussions is anything less than 1 cm² opening. The AHA and ACC recognize that the heart can be in trouble from that point forward.

Some cardiologists are now touting that people can wait until their opening is .6 cm², but there's no science behind it, and there isn't sufficient accuracy from an echo to be sure someone is at exactly at .6 cm² in the first place. (Absolutely no offense intended, but still waiting at .5 cm² is denial to the point of an unintentional deathwish.) That skinny number is also based on their generally quite aged patient population, who have generally sedentary lives. It would not be at all appropriate in my non-professional opinion for a younger person or a physically active septagenarian.

Not everyone needs it at the 1 cm² point, but it's the "safe zone" if action is decided to be taken. Some people with other, serious health issues or collateral heart problems are better off having the surgery closer to that point, so they have the best chance of rapid recovery, or so their heart function is diminished the least amount possible, to minimize danger from other heart issues already present. Most cardiologists are reluctant to send you because they are afraid if you die or come through it badly, they will somehow be blamed for sending you. Much easier to have a nasty surgeon "steal you away" to do the deed, or wait until you are half dead and grateful to see the surgeon. Some just seem to like the notion that they're "managing" the issue.

I have never seen a post where someone bewailed having gone for the surgery too early. I have seen posts from people who wound up with permanent heart damage from waiting too long.

The problem with numbers is that they are coming from an echo, and echoes are only as good as the techs, and they're better on Tuesday than first thing Monday or last thing Friday. In short, an echo number on aortic opening could reasonably range up to .3 cm² in either direction. When you're below the 1 cm² mark, those tenths of a cm² are a very big deal. Pressure gradients are less reliable than the aortic opening, and can be affected by other heart issues, such as arrhythmias and weakened or inefficient ventricular contraction (weak heartbeat), even by the way the person is lying on their side for the echo. What are your ventricle sizes? Is your left ventricle enlarging? Are you more tired than you used to be? Are you having vivid dreams or difficulty sleeping?

Some people don't get symptoms, some don't recognize their symptoms (they creep up very slowly, and often appear to be the aging process), some are in denial of them, and some think they have them when they don't. If you have them, they mean a lot toward a decision to operate. If you don't have them (or don't appear to have them), it doesn't mean you're fine to wait. It just makes it more difficult to decide.

I disagree with your cardiologist's statement about how you will feel after the surgery, and I've had the surgery twice. Most people here will tell you that's not an accurate portrayal. But then again, he doesn't know, as he's never had the surgery.

It's your heart and your life, not his. I would strongly consider the option of a second opinion from a cardiologist from a different group (not a profesional "friend"), or from a surgeon. I can tell you that my (former) cardiologist, whom I had been describing my symptoms to for over a year, said, "But you don't have any symptoms" when I said I wanted to look into surgery again (I was at .8 cm². which is quite nasty when coupled with AFib). He had simply been "turning off" when I mentioned symptoms, and had never written them into my record at all.

Best wishes,

 

[Fundy]

Martin,
I think basically your near a dangerous point, having severe stenosis. The numbers I recall are you probably have coin flip type odds of living two years without replacement(50%), 75% of making it a year, only 25% of making it 3 or 4, and close to nill for 5 years. So having the op now and you face a 1% chance of dying versus a 25% chance of dying by waiting a year.

I remembered a comment made by heart surgeon Dr. Giovanni Cioffo on Adam Picks blog about aortic stenosis progression.
http://www.heart-valve-surgery.com/...osis-progression-calcified-leaflet/#more-1103

Let me give you the perspective of most experienced cardiac surgeons on severe aortic valve stenosis. General statistics on its progression and symptoms seldom apply to each and every individual case. I have seen patients progress to critical aortic stenosis in less than six months and others who took years to develop a transition from moderate to severe stenosis. There are patients who develop severe symptoms with an aortic valve area of 1.0 cm2 and others who claim to have no symptoms even with aortic valve areas down to 0.5 cm2 (critical stenosis!). Here is my advice. Resist the temptation to fall in denial: severe aortic stenosis is very dangerous! If you have this diagnosis SEE a cardiac surgeon about it and DON’T WAIT for worsening symptoms. The risk of surgery (1-2%) is far less than the risk of a year of “wait and see” attitude (25%). See my blog post entitled “Aortic Stenosis - The neglected child” to get more information about this disease. If you want to live longer and better….Don’t be afraid of surgery: it is the solution, NOT the problem!!-Dr. Giovanni Cioffo

 

[skeptic49]

Lots of good advice here for you, Martin. Talk to a surgeon would be my advice as well.

Best wishes,

Jim

 

[Lily]

As mentioned in a previous post, in my most recent echocardiogram I was shown to have an aortic valve opening of .7cm2. I was expecting this to be the trigger for scheduling valve replacement surgery. My cardiologist was less ready to make this assessment. He felt that with a gradient reading of 36, I could wait another 6 months for the next cardiogram and that I could possibly even put off surgery for as long as 2 - 5 more years. This surprised me, and I told him that I wasn't sure that I wanted to remain in limbo for that long a period of time (I'm still asymptomatic.)

His response was that I should not look at AVR surgery as elective surgery. He felt that my best day post-surgery would not be better than my average day now (pre-surgery). His comment was not to think of it in terms of eliminating a disease (aortic stenosis); but rather, that I would be trading one disease (AS) for another -- a foreign valve in my system, with all the setbacks that that could entail. The longer I can hold off surgery, the more options for technological and medical improvements, he felt.

I'm not sure how I feel about this. On one hand, I don't particularly want to have surgery any sooner than I need to; on the other hand, I don't want to wait too long. I'd like to hear from those of you who have had AVR, and find out if you consider that the quality of your life improved after surgery. Thanks for your responses.

Martin

Martin, I had something like this happen, information from one cardio several months pre-op. He said something like, "what [valve] I had was better than anything that I would get." Interesting school of thought. And he told me to come back in a year. In my case, it turned out to be his erroneous opinion. But I floundered on his advice for several months, progressively feeling worse. Kept researching. Decided a second opinion would be a good idea. Researched excellent and highly recommended surgeons. Saw a surgeon. He said surgery. Now I had different opinions. What now? Saw two more surgeons for good measure. They said surgery too, especially after one of them ordered an angiogram. From those results, I was told I had, "weeks, not months!" I had hoped to put it off a few more months until after the new year, because of my insurance deductible. My surgery was scheduled a week later and the valve was in even worse shape than thought. "Fell apart." As it turned out, had I followed that cardio's advice, I might not have survived. I still puzzle and am disappointed at his very bad advice for me. I never went back to him or his group.

For what it's worth, my insurance approval labeled my valve replacement as "elective" also and I've read that term used here from other members also. Perhaps it is just a technicality of phrasing. It wasn't an emergency and it wasn't emergent. I wouldn't choose to go into valve replacement with such heart damage that it was an emergency though. I can't figure out how to word that better. I mean, given a choice, I'd rather go into the surgery at a better time than at a more dangerous time. I personally found the surgery to be pretty difficult.

Also, for what it's worth, I felt dramatically better with the new valve! I had been gradually declining and had begun dragging around like a late December grasshopper, with my failing and deteriorating bicuspid valve, and had just convinced myself that I wasn't aging very well. At age 42!

Take care

 

[ALCapshaw2]

Well Said Lily ! (I was going to put that in All Caps but thought better of it .

I hope that many who find themselves overwhelmed by their introduction to Heart Vavle Disease will find understanding and the will to proceed from your words and relating of your experience.

'AL Capshaw'

 

[Sandi]

I had last echo at the end of March. No symptoms. It is now May and the SOB has come more rapidly than I expected since no signs were there a month ago. Minimal invasive surgery set for June 8th. The SOB really started scaring me, so I am glad to be having surgery and would like to return to more normal way of living.

Sandi

 

[chuck barton]

Martin
For what it's worth i am in a kind of similar situation. I had an echo gradient of 50+ and they did not indicate the area on the results. My cardiologist called it a bullet proof case for immediate replacement, although i was asymptomatic and jog at least 3-5 miles a day. Prior to surgery i had a cath gradient of 30 and an area of 1.2, and the cardiologist said to schedule another echo in a year with his own machine and based on the results of the cath and knowing what a large error had been attributed to the first echo, he would be able to make a more accurate assessment then, if it was worse.
The echo is not a direct measurment, of gradient, while the cath is. The area may be better on the echo if the image is good enough, but you need to be aware that there can be such large errors. The bottom line from my cardiologist was that a gradient of .7 was time to schedule surgery regardless of symptoms, since at that point the first symptom could be fatal. That got my attention, his description was more graphic, and i will be watching for any suggestion of symptoms for the next year.
The only reason I could imagine for wating would be to wait until later this year for the percuntaneous AVR as there is supposed to be some approval for the general use of this technique later this summer, although I think i would still opt for the conventional operation at this time.
Good luck

 

[Martin]

Thank you

Thank you

Thank you all for your considerate and thoughtful responses...

I have scheduled a consultation with my regular doctor to discuss his recommendations for cardiac surgeons to interview for AVR. If anyone else has any recommendations for cardiac surgeons in the Seattle area, I'd welcome their input...

Thank you again for all your advice and good wishes...

Martin

 

[ALCapshaw2]

We have several members from Washington State. Johnny Stephens is one.
You may be able to find their posts by doing an Advanced Search (see the red line) for "Seattle" or "University of Washington". Be sure to scroll down and select "Any Date" from the 'drop-down menu' in the Date Box.