Stenosis Pathology without Valve damage?

[tobagotwo]

True enough, Mary. I'm not good that way, I readily admit. I hate suspense. And this is definitely a suspension bridge I'm looking at.

To me, suspense is a cheap form of manipulation, like playground bullies playing keep-away with some kid's lunch. Much of it is preventable, and usually has more to do with power or outright callousness than necessity.

I also don't want to walk into the cardio's office cold. Without some probable background information, I can't determine whether what he will recommend is in what I see as in my best interests, or just "formula." Without some data, I can't respond or discuss the approach.

For instance, without having some information on PH, if he should just start me on long-term drug therapy, rather than seeking a source and possible rescue, how would I know if he was attempting to cure it, or just resigning to control it? I want to look for an out before following a route of acceptance.

Not having PH would be nice. If he says I don't have it, I believe I can accept that gracefully ( ). After all, my original conclusion from the data was that I was somehow aortically stenosed again, which doesn't seem to be the case, so I was already wrong about that. Possible embarrassment takes a back seat to possible unpreparedness for me. That does allow for "jumping to concussions" occasionally.

What I don't want to do is stand there in shock and not be able to assess the data, diagnosis, and prescriptions he provides. I get limited time with him, and appointments are liable to be separated by weeks, during which I may be expected to take drugs or tests that I might later think may not be appropriate, and won't have the retroactive ability to discuss with him.

I can understand and appreciate the value of not worrying over things I can't change or that I may not have adequate information to be concerned about. However, based on the small elevation a year ago and the continuation of that trend now, there is definitely something askew with my machinery, regardless of whether the echocardiograph is or isn't functioning perfectly. To have an opportunity to understand the more likely possibilities before the meeting with the cardiologist is worth a little accompanying angst to me.

I appreciate the warmth and kindness of the posts from everyone. I sincerely hope I can feel foolish about this later, and prove you right.

Best wishes,

 

[tobagotwo]

Interesting point about Joe's enlarged left atrium, Nancy. Blood under increased pressure from the right side of the heart would wind up there, after its visit to the lungs. It would seem (logically) that if it's still under that much pressure when it gets there, that there are less likely to be any really major obstructions in the lungs. Could be constricted blood vessels, though.

Like Joe, my left atrium is also slightly enlarged, but I had laid it down to the stenosis, which could still have been the cause of mine. Assuming some level of echo accuracy, my left artial enlargement has diminished in the last year, which would not point it toward the PH being causative. Of course, maybe it would have shrunken more if it weren't now under pressure from the other side...

I don't know where or if it fits in either, but it may have a place. Thank you for the observation.

Best wishes,

 

[Nancy]

I think there are some situations that defy diagnosis. They may be a combination of many things, or may be something obscure. I KNOW this is the case for Joe.

He's had some excellent cardiologists working on him. They seem to be able to take care of MOST of the things, but there are some lingering serious issues that have no known diagnosis.

The cardiologist always jokes by asking how old Joe is and then says, "Well, you're too young to shoot"

Either there are too many things that Joe has wrong or they cannot be dealt with surgically at this time.

We know what works to keep the beast at bay, at least for now, and that is good diuresis, a regimen of drugs that work for Joe, a diet almost without sodium and vigilance in the extreme, plus the services of several excellent doctors who are always hunting for things, and very frequent medical appointments.

So far we have been able to bring him back to stability, even though he might get into rocky seas sometimes.

Apparently, it's got to be good enough for now. As long as it works----- it's as good as anything else they've tried.

 

[Nan]

Hi Bob, don't have any answers for you, but you are not alone. I think that my mild secondary (I hope) PH is caused by Mitral valve regurg. No one has paid any attention to it at all, medically until I caused a bit of a fuss, and then they decided that it didn't warrant treatment at this time. It is very scary to read all of the sites about PH....

Nancy (and Joe) have a lot of experience and knowledge....she almost always says not to leave it alone, push your docs for some answers....I think she is right.

But don't get too bogged down with what you read....everybody is different.

I know you like to have everything explained and rational, and it just doesn't always happen that way with medical care....it is sometimes an art as well as a science.

Good luck and keep us up to date.

 

[tobagotwo]

Well, the reason this has been so difficult to make sense of is that the protestations of the cardiologist that the valve is working perfectly have been deliberately omitting a critical fact that I kept pressing them on.

I was finally able to hardnose the PA on the phone. Sherlock Holmes' admonition that the simplest explanation that fits all the facts is probably the correct one holds true, and my original analysis of the situation was completely on the mark. My valve opening is calculated at 1.3 cm², which is moderate stenosis. The PH is probably still secondary.

I have some work to do to find out the causation and determine a course of action. The first echo from a year ago was carefully vague. This leaves a significant chance that the valve was stenotic when implanted and missed by the surgical intern who was watching the TEE (they check the function and pressure gradients before closing you up). However, I don't have any actual facts yet, so all is conjecture right now.

Do not pass seventy, go directly to the Waiting Room...

 

[Phyllis]

This leaves a significant chance that the valve was stenotic when implanted and missed by the surgical intern who was watching the TEE. However, I don't have any actual facts yet, so all is conjecture right now.

Bob,
Now you have me completely stymied. Do you mean the mitral valve was stenotic and they missed that or the new aortic valve that they implanted was stenotic?? Sending you all our best wishes for your quest for answers. Have you gone back to the surgeon with these questions?

 

[tobagotwo]

The new aortic valve, Phyllis.

I have to have more facts before I can go to anyone. There are many things that could have happened.

My chief concern is that now that I am lapsing back into aortic stenosis, they will want to try to "manage" it with drugs to avoid surgery. I am convinced they would manage me into congestive heart failure and permanent PH. Worse, I'll need their support to convince the insurance company of a "redo."

Best wishes,

 

[Phyllis]

Thanks for clarifying that- had no idea that scenario could be possible. Again, I wish you the best for a good resolution to this problem. One thing I know for sure, you will arm yourself with all the best information and as a result, get the best result!

 

[Nancy]

You're going to have to be really pushy in this situation, especially if you are becoming symptomatic. The most important thing to get done is what is right for your health.

I can't tell you how distressed I am to hear that this happened.

I know that you're very proactive and will get things done. Good thing you are as knowledgeable as you are. It might have gone unnoticed for a very long time for those of us less gifted in medical issues.

 

[KimC]

"My chief concern is that now that I am lapsing back into aortic stenosis, they will want to try to "manage" it with drugs to avoid surgery. I am convinced they would manage me into congestive heart failure and permanent PH."

Narrowing of the smaller branches of your coronary arteries can create higher pressures. More turbulent blood flow over that valve increases calcification, as you know.

Endothelial dysfunction, (a marker for small vessel disease) impairs the smaller arterioles, (including the ones in your lungs) and may be worth investigating. A non-invasive cardiac MRI could detect small vessel occlusion by showing perfusion defects. Those itty-bitty vessels are the work ants of your heart and lungs, and if they're not working, your pressures increase.

My .02 based on two years of hit and miss, including a lot of conjecture in-between. (I'm a creative, remember).

All the best,

 

[tobagotwo]

I appreciate those points, Kim. Thank you.

Right now, my thinking is that the PH literature shows that mild pulmonary hypertension is frequently a byproduct of and companion to valve disease and other left-heart disease. Unlike most types of PH though, it frequently does dissipate when the causation is removed. I would want to see if that happens first, before pursuing the PH on its own merits.

Best wishes,

 

[Phyllis]

Right now, my thinking is that the PH literature shows that mild pulmonary hypertension is frequently a byproduct of and companion to valve disease and other left-heart disease. Unlike most types of PH though, it frequently does dissipate when the causation is removed. I would want to see if that happens first, before pursuing the PH on its own merits.

I've been busy with summer company and know that you have been enjoying your trip to Maine, but I'm wondering if you or your doctors have come to any conclusions, Bob. Hoping this has had a good resolution.

 

[tobagotwo]

The cardiologist basically came up blank, and tried to sell me that it was just mild stenosis (it's quite clearly in the moderate range). He also claims that "everyone over 50 has mild PH." He said no physical limits, and he'll see me in six months.

I called Medtronics, and within he was allowed to say, the respondant agreed the numbers were certainly not what should be expected and he said if it were him, he would be "extremely curious" to find out the causation as well.

The upshot may be simply that the valve was smaller than I needed. It's functioning perfectly (I've watched it on the echo monitor). There is absolutely no evidence of calcification (both the tech and the cardio were completely solid on that, which was one of the few places he wasn't waffling).

However, the stenosis increased from a year ago, yet How does that happen without calcification? Gaining weight can do it, but I've stayed at the same weight. The valve itself tightening could do it, but you might expect some leakage (there is none). My arteries are quite clear.

I dunno. But I know they're certainly not going to do anything about it in the short term.

As such, I'm going to ignore it and move on for now. We'll see again in six months. Beats stewing about it.

Best wishes,

 

[Phyllis]

Thanks for the update, Bob. I wish there were a clearer explanation for you- we all like to know what we are dealing with and hence how to manage it, but I'm glad that you are able to move on and not let this get you down. Maybe in 6 months time, the echo will be normal and this will all be just an anomaly- I hope so!

 

[Nancy]

Bob-

Just wanted to take issue with your doctor's statement regarding PH. Everyone over 50 does not have mild PH.

PH is a rare disease. Probably 500 cases or so are diagnosed in the US per year.

Perhaps he got things mixed up with something else. It was that kind of attitude that allowed Joe's to progress to the severe stage and almost cost him his life. His cardiologist thought it was secondary to his other problems. It wasn't, it was primary. Assuming is not good with this disease. I don't want others with this diagnosis to ignore it. Be very, very vigilant, even if your doctor isn't.

I know you're an extremely smart man, so YOU keep track of any symptoms you are having. If you start to be symptomatic it's best to get a proper diagnosis from a specialist in the early stages to prevent permanent damage from PH.

Here are some links that provide more insight.

National Organization for Rare Disorders, Inc.
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pulmonary Hypertension, Primary

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pulmonary Hypertension, Secondary

National Institute of Health, Rare Diseases
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pulmonary Hypertension, Secondary

American Heart Association information on PH
http://www.americanheart.org/presenter.jhtml?identifier=11076
http://www.americanheart.org/presenter.jhtml?identifier=4752

Article in secondary PH.
http://www.emedicine.com/med/topic2946.htm

 

[tobagotwo]

Nancy,

I appreciate your extensive knowledge of PH, and I agree that primary pulmonary hypertension is an uncommon disease.

I believe what I have is mild SPH (secondary pulmonary hypertension). I don't think that type of PH is really that uncommon in stenosis patients, as AS is one of the most common causes of it, and is mentioned in every piece of literature I have read about it. I believe it may well be greatly underreported, though. I'm certain my cardiologist has not reported mine to anyone - including me. I have moderate stenosis, which puts me in the risk category for SPH. Following the stress my heart was under for years with my prior stenosis, it does make sense. Unfortunately, my prior echoes do not reflect gradients for PH.

The cardiologist does not want to put me on a calcium channel blocker at this point, which is one of the dwindling number of his decisions that I agree with. It would hide whatever is going on.

My heart has undergone excellent remodelling, despite the apparent pressure, so it seems to be dealing with things physically quite well, possibly better than I deal with it mentally.

Believe me, I will be looking at that number closely when the next echo comes up, along with many others.

Thank you for your continuing interest in my welfare.

Best wishes,

 

[bvdr]

You didn't get many clear answers and I know this will be hard for you to sit on for the next 6 months. You might have to though. Nancy is right that your doctor is wrong in saying that everyone over 50 has a little pulmonary hypertension. PPH is extremely rare but SPH isn't common by any means either.

Even after MVR I still had a mean mitral gradient of 11 and a dilated left atrium. I have been a little disappointed with my post-op echoes because I had hoped the pressures would have decreased, both left atrial and pulmonary. So I also have a gradient indicating (?)moderate stenosis even with a properly functioning mechanical valve. I've wondered if it is the problems with my aortic valve which is regurgitant and mildly (1.4) stenotic that has prevented my numbers from being better but I just don't know. Last echo showed LV had enlarged a little. My pulmonary and tri-cupid valves also have mild to moderate leakage. I actually have been doing pretty well "sitting on it". I am having too much fun in my life right now to go turning over any more rocks. Maybe I just don't want to deal with it for a while. We'll wait together, bro.

 

[tobagotwo]

I am in accord that SPH is not that common in general, but I believe it to be much more common in AS situations than reported, as cardiologists, the only people who see the echo results, routinely dismiss it. My cardiologist, who also tried to sell me that my gradient fell under mild stenosis (not even close - it's in the middle of moderate) is full of donkey dust about the PH in people over 50 also.

However, as he only sees echoes from people who have heart problems, usually valves, there might be some vague basis for that kind of literary license, if my suspicion about underreported SPH is correct.

Amen to the waiting, sister. I have some life to catch up on before I turn over any more rocks as well. As I said, they're not going to do anything about it for the forseeable future anyway. If you can't do about it, don't stew about it...

Best wishes,

 

[Emma]

Hi Bob,
I have no advice I'm afraid as all these numbers and things go way over my head - they don't give them to us poor parents over here unless we badger the docs for them (which i have done in the past) but you have always responded to my mails and I wanted to respond to yours sending support and love and hoping you find the answers you want soon.
Love Emma
xxx