When to schedule surgery. What are symptoms

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chuck barton

chuck barton

Member
Joined
Apr 24, 2010
Messages
18
Location
houston tx
I posted here just after I had my cath pre surgery and the cardiologist decided I didn't have the appropriate symptoms with a gradient of 25. Nothing really changed since then. I am 70, run on a treadmill or elliptical for half hour at least 3 times a week and swim 1/4 to 1/2 mile every day.
I wanted to start swimming longer distances but don't really seem to improve much when I start to need more breath. Could be the AV or my poor breathing technique. I also have to work really hard to keep my ankles from swelling. Light dose of lassix and tight socks.
It seems to me that I might want to try to schedule the surgery sooner than later when the gradient is at 45 or 50. As I read the threads on this site most people seem to have a clear decision point. But I would be interested in hearing from anybody who had to push their cardiologist to put the date forward.
The only reason beyond the cardiologist's reluctance to do it at this time, is the possibility of having a non-invasive subcuntaneous replacement. At the moment I would still go with the pig, but some people have had success with the less invasive surgery. When I talk to my PCP she thinks I should push to have it now.
The idea of symptoms seems subjective anyway. If you live in a single story house you might feel you have no symptoms but in a double story where you are constantly running up and down stairs, the same heart valve might seem to have symptoms.
 
Have you considerred getting a second opinion from another cardiologist or a surgeon?
Beside your gradient, do you know your other measurements? like the size of your valve opening? They usually play a big part in when to have the surgery.
 
I can't speak to your specific gradients and whether they alone warrant surgery or not, but as has been said on here many, many times before, cardiologists have a tendency to want to wait as long as possible before recommending surgery, whereas surgeons are much more likely to want to get in there and fix things before permanent damage is done to your heart. If you are solely going on your cardios recommendations, it may be time for you to consult with a surgeon or two (you can usually self refer) and get their opinions. At least that may give you peace of mind that waiting is the right thing to do or not.
 
Other measurments

Other measurments

Thanks. The only direct measurement is the gradient from the cath. The calculated area was .6 or .7 I don't remember. The surgeon tended to say that the decision point was based on the gradient but I suppose there could be further heart enlargement living with any gradient.
At the time I thought that if I didn't need surgery, then great. There was no plaque in the arteries so it seemed to be a pretty good situation. But in the past 6 months since the echo, it seems to emphasize the symptoms or possible symptoms.
I don't exercise past a certain point because it seems unwise to push it. And it doesn't get so easy that i really want to do more. Still have to fight some swelling which may or may not be caused by the heart valve, but at least my PCP thinks it is.
The thing is, valve disease is not reversible and I think the surgeon would go along with the decision to do it now.
 
I would get a 2nd opinion from another surgeon. the trigger point for many surgeons is .8 for the aortic valve and below 1 is considerred time by others. especially if you are having symptons
 
You sound very well informed. I don't have anything to add except to agree with you on symptoms. A iittle breathlessness climbing the basement stairs was the only symptom I noticed. If I hadn't had a basement, I wouldn't have had a symptom to bolster my confidence that the docs were right in saying I needed the surgery, symptoms or not. :D
 
kfay said:
I can't speak to your specific gradients and whether they alone warrant surgery or not, but as has been said on here many, many times before, cardiologists have a tendency to want to wait as long as possible before recommending surgery, whereas surgeons are much more likely to want to get in there and fix things before permanent damage is done to your heart. If you are solely going on your cardios recommendations, it may be time for you to consult with a surgeon or two (you can usually self refer) and get their opinions. At least that may give you peace of mind that waiting is the right thing to do or not.
Click to expand...

AMEN ! AMEN ! AMEN !

Old School Cardiologists tend to like to wait for Symptoms
while Surgeons like to FIX the problem BEFORE there is Permanent Damage to the Heart muscles and walls.

To my (Engineering) mind, Symptoms are a sign of DAMAGE to the Heart.
It is Not Uncommon for patients to have NO Symptoms yet have severe valve damage.
Some have reported that their valve literally "fell apart" in their surgeon's hands "even though" they thought they had No Symptoms.

Many Cardiologists and Surgeons use 0.8 sq. cm as their "trigger" for recommending Surgery.

A couple of pertinent Famous Sayings from VR.com are:

"The Worse it Gets, the Faster it Gets Worse"

"Sooner is Better" - I tend to support this philosophy, especially for Aortic Stenosis.

My recommendation would be to get a second opinion from a SURGEON with lots of Valve Experience.

One more comment. Tissue Valves tend to deteriorate slowly after age 60.
That said, the Bovine Pericardial Tissue Valves seem to last longer than Porcine Tissue Valves.

'AL Capshaw'
 
The gradient is only part of the story. It's "professionally legal" when your aortic valve opening is smaller than 1.0 cm². However, most cardiologists are holding out for less than .8 cm² these days. Some are saying .6 cm² is a workable line, but I would have a tough time agreeing with that for someone who is younger or active (like yourself).

You risk permanent damage at the smaller valve openings, and even possible death, should you be shoveling heavy snow or doing some similar thing.

What you need to do now is to consider and write down the symptoms that you have, some of which you have alluded to, and present them to your cardiologist or a surgeon. Symptoms for this creep up slowly, and are very difficult to judge for yourself. However, you have exercise tolerances and other things to mention. Also, do you get a tightness at the top of your throat sometimes, or other signs of angina? It doesn't always go with exercise.

Just be sure you aren't hiding symptoms from yourself, or ignoring them as "temporary."

I forced the issue my last time, as the cardiologist was content with me becoming more and more crippled from my heart's decline. It was as if he couldn't see that I was only in my 50s and not ready (or able) to stop working, or to minimize my existence to match the state I was in. I fired him when I finally got my echo numbers (months after the echo) and found I was well within the parameters to have the surgery. I went back to the cardiologist I had seen before. I thought I didn't want to drive farther (he had moved), but it was worth the trip. I also went to my original surgeon, and pleaded my case to him. He agreed with my basic assessment and evidence, and I had the surgery very shortly thereafter.

I can't know what your situation truly is, but symptoms and valve area outweigh gradient. Also, the cardiologist who does a catheterization is an interventional cardiologist, and is usually not a surgeon (in case you assumed he was). If you feel that you are losing ground with your heart, you should talk to a thoracic surgeon or at least another cardiologist (from a different group) to get a real second opinion.

Best wishes,
 
Hi Chuck,

In my case, my cardiologist told me that I should get it fixed prior to showing symptoms. He said that I had a best 1 year to get it fixed, but that I should really have it done in 4 to 6 months, as from there on it was a fast downhill ride, and that I most likely would be facing a "major" cardiac event within the 12 months if I didn't address the issue. In otherwords... let's just say, that I most likely would not be enjoying life next year. :-(

Chuck, I should also point out, that I am extremely active, I lift weights, and run on a treadmill 2 miles, each day. I had no idea this was going on. I still feel a-symptomatic.. But I know this needs to be done.

I say, that one should seriously consider surgery, especially when you know for sure that it ain't gonna get any better, and the timeline allows you to be as healthy as possible to take on the surgery itself. I think that the healthier you can be going into surgery, the better your chances are for a successful surgery, and post-surgery recovery.

As Al said in above the above post, (in so many words that is) ........."Get Er Done" before the issue causes further heart damage.

I would seek out a second opinion from a cardiologist, or if you have had all the prelimininary tests, talk to a few surgeons. You don't want to get to the point of an enlarged heart, A-fib, fainting, dizzyness, or worse, heart failure.

Rob
 
Hello and welcome to our wonderful community!

It is my experience, echoed by several here, that the cardiologist will want you to hang on to your native valve for as long as possible. I point blank asked mine exactly when she calls in the surgeon. She told me when the valve opening narrows to .7 cm sq. So I trusted her and waited. Then, once it was found to be at .7, I had a 4 month delay of sorts (other unrelated medical things suddenly popped up) until surgery and while I won't say "I barely made it", I will say, my symptoms became significantly more pronounced in that 4-5 months. Scary.

I am not a physical person. I cannot speak to your swimming prowess before and after surgery. You might go over to Active Lifestyles and read some accounts of how quickly, thoroughly one can get back into shape, if/when numbers improve, etc.etc.. My sense is that it is the luck of the draw as to whether one zooms back to shape or surpasses current standards. Everyone's recovery is different -- very individual.

At 70 years old (I was 52, am now 56) I cannot imagine wanting to jump right into surgery. However, bodies do tend to start reaching their "shelf life" in various little ways. Some of those ways might indeed need a strong heart to help them through. Were something else to "get at you" would your heart, in its current state, be strong enough to rally you through? Hearts are pretty darn important! I would think that fixing yours now, when you can plan the most convenient time on your own calendar, might strengthen your entire being for many, many years.

If you have not spoken with a surgeon, I think you should. My surgeon would not talk to me without the cath. You just had yours! You are armed with all the initial info a surgeon needs. Please ask your cardio who they would recommend. Go see that person and then perhaps get a second opinion, too. Go with a list of questions -- let us help you formulate some as you learn more about your condition and options.

Good luck and keep posting.

Marguerite
 
Thanks for all the very informative replies. It first made me look at the calculated area and it was .87. No doubt it would have been .8 or .9 if they actually measured it but formulas do wonderful things for accuracy. I had gone to a thoracic surgeon who does a lot or valves first when my echo gradient was .5. He wanted to operate as soon as the cardio could get a cath done, not to decide whether to do it, but rather to be sure there was nothing wrong other than the valve. The cardio said I didn't need to return to the surgeon but just get snother echo in a year (April) and he would be equipped then, in view of the previous discrepencies, to get a valid number from the echo (which was done in a different clinic by a different doctor).
So I took his advice but kept reading posts here and elsewhere, and came to the conclusion that there didn't seem to be any obvious reason to delay surgery with any significant stenosis.
I have benefited greatly from all the posts, and when I go in to see my PCP about another matter, I will ask her for another reference to the same surgeon (so the insurance company will be happy) and ask him if there is any reason not to do it now. I will make, if necessary, many of the points that you have made although I think he will be, and in fact would have been, in favor of addressing it sooner rather that later. If I had it to do over again, I would had ignored the cardiologist and gone back to the surgeon after the cath. But this required the ability to research a bit and shows the valus of this site. So Thanks
 
Sounds like a good plan Chuck.

To my mind, the primary benefit that Cardiologists provide is a diagnosis regarding your valve.
Once you have that diagnosis, IMO, Surgeons have a better 'feel' for WHEN to proceed with Surgery and the potential outcome, after all, that is 'what they do'. The vast majority of Cardiology patients have Coronary Artery Disease and many Cardio's do not keep up with the latest developments in the Valve Options. FYI, you can even Self Refer to Surgeons. Just tell them what is wrong with your valve and bring copies of your latest Echo, Cath, and any other test results with you. That's all you need, unless you are in a Medicare Advantage Plan that requires a referal from a "gate-keeper" (UGH). Fortunately, it seems that you have a Very Good and astute PCP so that should not be a problem.

For people on the fence about proceeding with surgery, a good Question to ask the surgeon is:
"What are the Risks and Benefits of Proceeding versus the Risks and Benefits of Waiting?"

From my perspective, for most cases of a deteriorating valve, there is little benefit in waiting and proceeding ASAP to surgery offers the best opportunity for maximizing the surgical benefit and a having a good recovery.
For repeat surgeries with High Risk conditions, that decision can become a little more 'dicey'.

'AL Capshaw'
 
You are the man! I hope I am working out like you at 70 and beyond. Great to hear that you are not slowing down.

At 34, my cardio did not think I needed surgery. I only had shortness of breath climbing stairs. I was tired too much; Napping in the evenings and on weekends. I finally decided to get a 2nd opinion. Every one of them, said surgery now. I am not a believer in going to a surgeon before the cardio says so. Meaning my 2nds were all cardios. Yeah more than one as I was not ready mentally.

At 46, my cardio said it is time again. Again I was not ready. Very soon, however, I started needing to walk hallways with my mouth open. It was time. In addition, recovery was taking longer than before.

I will add that when I worked out pre-op, my heart was not a hinderance. At workout heart rates, the regurgitation was minimized. That made the whole thing that much harder to accept. I finally got to the point where I did not want to get on my bicycle because of how I felt while not working out.

Scott
 
Superbob said:
You sound very well informed. I don't have anything to add except to agree with you on symptoms. A iittle breathlessness climbing the basement stairs was the only symptom I noticed. If I hadn't had a basement, I wouldn't have had a symptom to bolster my confidence that the docs were right in saying I needed the surgery, symptoms or not. :D
Click to expand...

I never had symptoms, just the fact that I had a heart murmur. Thank god my wife is always on me about getting to my appointments!
 
Thanks
I am waiting to get an appointment with my surgeon as soon as he is available. Apparently Labor Day is big for thoracic surgery. The calculated area was .87 so I am considering that I have time to discuss valve options and plan the operation. I know they have done some percuntaneous replacements this fall, after they were approved for general use so we will talk about that too.

Cheers
 
chuck barton said:
Thanks
I am waiting to get an appointment with my surgeon as soon as he is available. Apparently Labor Day is big for thoracic surgery. The calculated area was .87 so I am considering that I have time to discuss valve options and plan the operation. I know they have done some percuntaneous replacements this fall, after they were approved for general use so we will talk about that too.

Cheers
Click to expand...

I',m pretty sure the only percutaneous valves that have been approved for general use so far is the melody valve, for the pulmonary position. As far as I know the Sapien, for Aortic valves is still just approved for clinical trials, for high risk patients.
 
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