Need an opinion

[Guest]

Hello all,
I have some concerns that I would like to put out there to get some opinions from people here. I am 55 and had a AVR done in 2009. I had many of the normal symptoms before that time so went to see a cardiologist. After lots of testing, and going to a pulmonologist they finally did an echo. My cardiologist almost missed that my aortic valve was severely leaking, I had to keep pressing the issue. Actually the surgeon told me after my surgery that I was very intune to my body as if i did not have the valve replaced I would have had a very serious issue in a year. So I have little trust in doctors.
My father's side of my family had heart issues in their 40's and 50s. A few died of heart attacks and strokes in their 40's and my dad had his first heart attack in his 50's and died at the age of 71 of a massive heart attack.
Even after my AVR I never felt great after the surgery like most people do. I still have symptoms.
This was in the Chicage area.
Fast forward to now where I live in Florida now and of course have a different cardio.
My symptoms are:

Chest pain, stomach pain
Chest pressure
Shortness of breath-during exertion and at rest
PVC’s
PVC's more often when laying on my left side
Extreme fatigue
Sudden sweating
Nausea
Get full very quickly after eating, lack of appetite
Chronic cough, cough up white mucus (have had a chronic cough for over 15 years now)
Light headed
Sudden headaches
Memory loss
Confusion at times
Higher blood pressure

So I have had some health issues lately, a couple times in the hospital in the last couple months. I had a small hemorrhage in my brain (they kept me in the hospital for 3 days). Then last month I had a chemical stress test and had trouble breathing a few hours later so they told me to go to the ER. Was in the hospital for 3 days. They also did a EGD and a colonoscopy, where they found no issues.
Had an echo done, this is what they found:

Mildly calcified mitral annulus. Mild mitral regurgitation. Mild pulmonic regurgitation. Mild tricuspid regurgitation.
Regional wall motion abnormality. LAD wall motion abnormality.
My aortic valve looked great.

My stress test showed:

SPECT images demonstrate a small perfusion abnormality of mild to moderate intensity in the basal inferior and mid inferior segments.
There is a small predominant fixed defect in the basal inferior and mid inferior segments. This likely represent attenuation artifact. However, small area of infarction cannot be completely excluded.
Regional wall motion abnormality. LAD wall motion abnormality.

Last week I had a heart CT done, here are those results:

Calcium score of 54, (which I know is very low so just mild).
They found the all the calcification in the LAD artery. 25% stenosis.
They found prolapse of the posterior leaflet of the mitral valve.

My cardiologist said, before I got the CT scan, that he does see a reason to have a heart cath done. The only reason I got the heart CT done was I asked my primary doctor.

So with all that said I believe I should have a heart cath just to make sure there are no blockages.
Also a lot of my symptoms look like mitral valve problems, even though the echo said it was only mild regurgitation. But now since I found put I have mitral valve prolapse maybe that is causing issues?
So my question is, should I really trust my cardiologist or get a second opinion? I am just not feeling well and getting tired with going to the doctors and they say they can't find anything really wrong, even though I know there is something going on.
Thanks!

 

[palmaceae]

Actually I don't know why it has me a guest above, looks like my session timed out before I finished the above post!

 

[honeybunny]

I am not as tuned in to testing and measurements as some folks here are, so I can't give an opinion on all the symptoms and test results. As to your question, if you still don't feel well, I suggest you gather up all your medical records and get a second opinion if you can. This is not to say that you shouldn't trust your doctor, but I know it is frustrating to submit to all that testing and not receive a definitive response so a second opinion may put your mind at ease or develop a plan forward. I also vote "yes" to the heart cath. Keep us posted.

 

[palmaceae]

I am not as tuned in to testing and measurements as some folks here are, so I can't give an opinion on all the symptoms and test results. As to your question, if you still don't feel well, I suggest you gather up all your medical records and get a second opinion if you can. This is not to say that you shouldn't trust your doctor, but I know it is frustrating to submit to all that testing and not receive a definitive response so a second opinion may put your mind at ease or develop a plan forward. I also vote "yes" to the heart cath. Keep us posted.

Thank you! I want to trust my doctor but the history of my medical issues have eroded that trust. Matter of fact, yesterday I was at my primary and he gave me the results of my heart CT and my calcium score. On the report also showed my mitral valve prolapse. I asked him about it and he said that would not cause chest pain. So when I got home I looked the symptoms up for mitral valve prolapse and the number 1 symptom is chest pain. So he did not really know. Hence the reason I am a bit wary on what they say.

 

[Zoltania]

Thank you! I want to trust my doctor but the history of my medical issues have eroded that trust. Matter of fact, yesterday I was at my primary and he gave me the results of my heart CT and my calcium score. On the report also showed my mitral valve prolapse. I asked him about it and he said that would not cause chest pain. So when I got home I looked the symptoms up for mitral valve prolapse and the number 1 symptom is chest pain. So he did not really know. Hence the reason I am a bit wary on what they say.

I had mild mitral valve prolapse for decades. Even when it progressed to moderate and then severe, I never had any chest pain from it. That's one anecdatum .

 

[Nocturne]

Thank you! I want to trust my doctor but the history of my medical issues have eroded that trust. Matter of fact, yesterday I was at my primary and he gave me the results of my heart CT and my calcium score. On the report also showed my mitral valve prolapse. I asked him about it and he said that would not cause chest pain. So when I got home I looked the symptoms up for mitral valve prolapse and the number 1 symptom is chest pain. So he did not really know. Hence the reason I am a bit wary on what they say.

Never trust your cardiologist. All they REALLY know how to do is sort patients into one of three bins -- "Needs a Statin", "Doesn't Need a Statin (Yet)", and "Refer to a Surgeon".

Anything beyond that is beyond them.

 

[epstns]

Nocturne, I respectfully disagree. I fully trust my cardio. Over my years with him (now about 11 years, I think), he has earned my trust many times over. The question of patient-doctor trust and relationship is very individual. Some have excellent relationships, others less so. If your comment is meant in jest, sorry I over-reacted. If it is meant seriously, please accept that others have their own opinions. My own opinion is that doctors start out low on my trust scale and earn their way up. My cardio is way up there.

True, we the patients must be the best judge of whether a cardio knows enough and applies it well enough to earn our trust. Palmaceae, it is too bad you've left the Chicago area. I know a very good cardio here. . .

 

[palmaceae]

Nocturne, I respectfully disagree. I fully trust my cardio. Over my years with him (now about 11 years, I think), he has earned my trust many times over. The question of patient-doctor trust and relationship is very individual. Some have excellent relationships, others less so. If your comment is meant in jest, sorry I over-reacted. If it is meant seriously, please accept that others have their own opinions. My own opinion is that doctors start out low on my trust scale and earn their way up. My cardio is way up there.

True, we the patients must be the best judge of whether a cardio knows enough and applies it well enough to earn our trust. Palmaceae, it is too bad you've left the Chicago area. I know a very good cardio here. . .

Thanks, I had a good cardio in Chicago too, but he was the one who almost missed my leaky aortic valve. But at least he did catch it and had a wonderful surgeon. My cardio here is good too, but they are human and miss things. They have lots of patients and little time. But with my symptoms and test results my cardio is saying it is GI and my GI is saying it is heart related. And my primary just does not know!
So you can see why my trust in doctors have waned.
Maybe there is nothing seriously wrong with my heart, but I know there is something wrong.
I am waiting on my cardio to call me so I can talk with him again. I will push for a heart cath just to make sure, and I would assume they can also check my mitral valve at the same time?

 

[Nocturne]

Nocturne, I respectfully disagree. I fully trust my cardio. Over my years with him (now about 11 years, I think), he has earned my trust many times over. The question of patient-doctor trust and relationship is very individual. Some have excellent relationships, others less so. If your comment is meant in jest, sorry I over-reacted. If it is meant seriously, please accept that others have their own opinions. My own opinion is that doctors start out low on my trust scale and earn their way up. My cardio is way up there.

True, we the patients must be the best judge of whether a cardio knows enough and applies it well enough to earn our trust. Palmaceae, it is too bad you've left the Chicago area. I know a very good cardio here. . .

Indeed, some docs are probably trustworthy.

My first cardiologist told me that my AVS was because of high cholesterol, and then later noted to my dentist (I read his note over the dentist's shoulder) that it was due to my being "morbidly obese" -- when I had never been morbidly obese, and in any event this cardiologist had never seen me before I lost a lot of weight. He had seen a 42 year old man with CALCIFIC aortic valve stenosis and an ungodly high CAC score and made up a story in his head to explain it. This ******** told me to "go home and live your life", and never tested my Lp(a) because he was entirely ignorant of the link between Lp(a) and CAVS. He would have happily kept me in the dark and ignorant about the continued danger I was in, and kept my kids in the dark about their inherited danger as well. The FIRST thing a cardiologist worth their salt should do when presented with a CAVS patient in their early 40s is check their Lp(a) levels. Instead he chose the path of self righteous, patronizing ignorance.

My current cardiologist is better - she at least had the knowledge and experience to check my Lp(a) - but has still come out with whoppers like "The statin you are on will freeze your CAC score growth". She is either ignorant, or a liar.

Not impressed. Not impressed with any of them so far.

 

[dornole]

I can only speak to the mitral valve issues . . . I have had mod-severe mitral regurgitation for 15 years now with none of the symptoms you describe, and yours is reported as Mild and seems likely to be caused by the posterior leaflet prolapse, which is the most common heart defect in the country and something that many people live their whole lives with without it causing severe regurgitation or any symptoms. So I can see why your cardio is not enthused about that particular theory of what's causing you trouble.

It sounds like getting a cath to check for blockages might put your mind at rest and/or reveal greater blockage than 25% in other blood vessels as an answer to your symptoms? You could try to get an order for one, or step up to a diagnostic specialist like the Mayo if you are certain something is very wrong.

 

[epstns]

Nocturne, I see your points, and would also be most disappointed with that cardio.

A couple of suggestions:
1. Can you get a second opinion from another cardio, or are you restricted to this one by an HMO, etc.?
2. If they balk at a cath as being "too invasive for this issue" then maybe they will agree to a cardiac MRI. (At least I think it is the MRI which is analogous to a cath but purely non-invasive.) My wife pressed for this, and that's how they found her blockage. Of course they then had to go in to stent it, but had it not been a blockage, she would not have had the risk of complications the cath brings.

Your case, with your high Lp(a) is uncommon, so I would expect only those cardios who currently are really at the top of their games to catch on. In your case, can you go to a cardio at a major teaching hospital?

 

[palmaceae]

I went to a new cardiologist today and really liked him. I told him what happened and my symptoms, he also looked at my records before I got there so he was prepared. I told him that my other cardio said I did not need a heart angiogram, but my new cardio said with your symptoms and family history you most certianly need a angiogram. He said a calcium scan does not show soft plague which I may have, and the stress test does not always show blockages. The gold standard and the only 100% way to see if you have a blockage is an angiogram. Will be scheduled in a week or so. At least I will know if there is one or not, then go from there!

 

[jwinter]

You asked for opinions so here is mine. You have a lot of history and symptoms that I would not chose to ignore or back away from. It is good you saw a different cardio and that the angiogram was ordered. I know from experience that we do not want these tests "just for the heck of it" Some are painful and invasive.

I have had two aortic valve replacements before I turned 60. I had and have zero chest pain and only shortness of breath shortly before both diagnosis. My uncles also passed away in their 40's from heart attacks and two brothers of mine dropped over in their 50's so you DO have good reason for concern. Speak up and speak loudly when you have to!

Doctors are people just like the rest of us so they are not perfect. The combined information you give them, the knowledge they have, and working together on it has worked well for me

Just like back in my working days.............Attitudes and behaviors!

Good luck and do keep us posted.

 

[palmaceae]

You asked for opinions so here is mine. You have a lot of history and symptoms that I would not chose to ignore or back away from. It is good you saw a different cardio and that the angiogram was ordered. I know from experience that we do not want these tests "just for the heck of it" Some are painful and invasive.

I have had two aortic valve replacements before I turned 60. I had and have zero chest pain and only shortness of breath shortly before both diagnosis. My uncles also passed away in their 40's from heart attacks and two brothers of mine dropped over in their 50's so you DO have good reason for concern. Speak up and speak loudly when you have to!

Doctors are people just like the rest of us so they are not perfect. The combined information you give them, the knowledge they have, and working together on it has worked well for me

Just like back in my working days.............Attitudes and behaviors!

Good luck and do keep us posted.

Thank you! This is exactly how I feel. I too am glad I saw another cardio to get to the bottom of this.
Thanks again!

 

[palmaceae]

Well I have my heart cath yesterday and no blockages over 30% so that is good. Just have to keep searching on where my symptoms are coming from.