BAV, but it's not ?

[Cyberian]

Burning chest pain, hammering heart beat, can't catch my breath, nearly pass out- moderate to heavy exertion usually sets it off. It's been like this since childhood, markedly worsening in the last year so off to the clinic I go. Family physician doesn't like it one bit and refers to Cardiologist. Non stress echo, nuclear stress, TEE, heart cath- diagnosis BAV, ascending aortic aneurysm @ ~4.5 and they may not be causing the symptoms?

BAV is spotless and works fine, I'm 6'3" and built big so aorta may not have started out all that small. Cardiologist not sure what's next and referred to cardiac surgeon. Initially, surgeon thinks we should leave it all alone until aorta expands enough, "what about the symptoms doc?" He'll get back to me.

Can an enlarged aorta alone cause the problems?

Granted, I'm not a physician, but it would make sense to me to order a stress echo and have a chance at seeing the valves in action under a load, no?

There may very well be other underlying issues going on blood and circulation wise. Splenectomy 1985, DVT 2012 likely due to blunt trauma. Cold tolerance diminishing as I get older (46 now) it's like my blood gels and slows flowing to my finger and toes. Moderate lung scarring likely from concrete dust / silica inhalation diagnosed as minor COPD/ moderate emphysema, blood ox consistently @ 95+ though.

I'm kind of hanging for a bit waiting on the surgeon to return from a short trip. He did mention checking with radiology about aortic root size, possibly leaving valve and root, replacing enlarged aorta section. He doesn't perform that surgery, has connections who do I guess. I just want to be sure that if we do go that route, it'll fix the symptoms?

 

[AZ Don]

Can an enlarged aorta alone cause the problems?

My root and ascending aorta were 5.0 - 5.1cm and I had absolutely no clue. I was exercising frequently without issue. Everyone is different but if you had these symptoms since childhood it doesn't sound they were caused by an aortic aneurysm. These normally develop over time so it is not likely you had it in childhood. The stress test sounds like a good idea.

 

[Paleowoman]

Burning chest pain, hammering heart beat, can't catch my breath, nearly pass out- moderate to heavy exertion usually sets it off. It's been like this since childhood,

Your saying that you've had this since childhood made me think of something that I often had during childhood and until my twenties: very sharp chest pain in heart area, couldn't breathe for 30 secs or a minute becuase the pain was so intense, I would literally 'freeze' for that time, and would have soreness in the heart area for a while following one of these 'attacks' and even pain down my left arm like angina. I found out what this was only a few years ago when a work colleague of my husband's described the same symptoms but he was in his 30's or 40's and none of the specialists he saw could figure out what was wrong as tests all came back okay. The wonders of the internet: it's called Precordial Catch Syndrome http://www.precordialcatchsyndrome.com Have a look and see if it is similar to what you have - it's less common in adults but does happen and if all the tests come back fine it's something to consider. It's just, as AZ says, bicuspid aortic valve and aneurysm don't cause the symptoms you descirbe and cetainly not in childhood.

 

[Cyberian]

..bicuspid aortic valve and aneurysm don't cause the symptoms you descirbe...

Cardiologist suspected a valvular issue from the start due to symptoms. Late triggering electrical issue has been mentioned and I could go along with that. Heart rate jumps very rapidly on exertion, slows when the hammering starts. Palpitations and irregular pulse post episode for lately increasing duration. Heart cath set off fluttering and randomness for ~3 days, longest yet.

I've managed it through a career as a commercial roofer and thought that I'd had a pretty decent system worked out to prevent extreme incidents. A few extra breaths before climbing ladders, slowing pace when heart rate climbs, slow and steady wins the race. Heart rate increase always precedes shortness of breath, then hammering and light headdedness. Stopping everything, catching my breath usually eases the hammering and I can continue on after recovering a few minutes. Latest episode that caused me to seek treatment lasted almost 10 minutes and I seriously wondered if I could ever catch my breath. Thinking about it now, the hammering eased up into a rapid heartbeat before it felt like breathing was accomplishing anything.

I do still wonder if valves that perform with little indication of issues while calm can present issues when under a load. More than once I've held back a "Yeah, no sh*t Doc" when they tell me all pumping fine at sedated TEE and heart cath. I don't have symptoms at rest. I'll push the issue of a stress echo.

 

[Paleowoman]

Yes, but you said you'd had these symptoms as a child which wouldn't tie in with bicuspid unless it was already seriously stenosed as a child, like some are, and you would have had it replaced already ! Sorry if I misunderstood your first post.

 

[Cyberian]

I don't think that you misunderstood, you are correct that it should've been caught then. I guess what I'm trying to say is that I'm not sure that the valve(s) having a problem is the bicuspid. BAV is new to the family we think. Prolapse mitral valve is not. Heart murmur diagnosed as a child and was told then that symptoms definitely not asthma. It was passed off as "just take it easy and hopefully he'll grow out of it" and I guess maybe I din't.

 

[Paleowoman]

What exactly were the symptoms of chest pain and breathlessness you had as a child ?

The heart murmur you had diagnosed as a child, was that your bicuspid aortic valve ? I had bicuspid aortic valve but the pain etc I had as a child was nothing to do with that…..in fact I never had any symptoms from the BAV, yet it was replaced in January as the stenosis got severe, though, as I say, without any symptoms. No one else in my family had/has bicuspid aortic valve, it can obviously occur in isolation.

You mention mitral valve prolapse - do you have mitral valve prolaspe as well as bicuspid aortic valve ? When I was younger mitral valve prolapse was one of the things suggested as a cause of my heart murmur until echocardiogram showed bicuspid aortic valve. But either way, the pain etc was nothing to do with either !

 

[Cyberian]

Symptoms identical from childhood to now, just quite a bit more pronounced in the last year. As exertion ramps up I get increasing burning pain, pounding heart beat, short of breath, nearly passing out. Normal activities like walking, even at a relatively brisk pace bring little or no symptoms. Multiple flights of stairs, climbing multi-story ladders, repeated heavy lifting, running or even jogging, these things hurt.

Heart murmur diagnosed as child was never investigated past that point. Apparent lack of stamina was attributed to growth outstripping internal organ development and that it'd work out eventually.

Echo last month showed relatively minor regurgitation at mitral and aortic valves. Unable to clearly see cusp state of aortic at that test. Nuclear stress went fine for the most part, though they did remark on how quickly pulse rate climbed. Nuc Stress pulse rate never did approach what I term "danger zone" when my heart starts pounding. Cardiologist compared unrelated CT from 2006 to nuclear results and measured apparent aorta enlargement at that point. TEE confirmed BAV. Heart cath to see condition of aorta and get closer look at BAV showed zero stenosis, no plaque, no calcium build up.

Mother currently taking beta blocker(s) for MVP. Fairly certain I am only family BAV, something fairly closely related to Marfan appears likely.

 

[McCbon]

It sounds like you have been struggling with the symptoms a long time. I hope they sort it out for you soon! Given that
they think your BAV is not severe or critical then,
has anyone suggested that you see a cardiac electrophysiologist? The symptoms sound similar to what I have heard about cardiomyopathy. Also, I have read that aneurisms do not usually manifest with symptoms, until it's too late, or almost too late. Obviously, I am not qualified to even guess what is going on, it just seems so unfortunate to not have answers after all you have been through. Have you considered traveling to highly rated cardiac care center like Mayo, or Stanford etc?
Take care, Bonny

 

[Cyberian]

Mayo has been mentioned a few times. Our clinic here is affiliated with them. Cardiac electrophysiologist hasn't been talked about yet that I recall, but we do have two I think and may be involved in the consulting and discussing that the surgeon is/has been doing.

The symptoms all I've ever known, so I haven't really considered it debilitating until lately. No one at my current employer of 12+ years had any idea of any issues until I took an unheard of weekday off for an appointment w/ cardiologist. They are now almost as upset as family so I need progress toward fixing it hopefully soon. Light duty is getting on my nerves.

 

[cldlhd]

Hear hear, light duty is getting on my nerves also. Both at work and home.

 

[Cyberian]

Surgeon's office called to schedule aorta repair in a few weeks. Not gonna happen until they can convince me that that's all it will take to end the symptoms. That appointment is next Wednesday.

I forget where, but have seen reference to aorta or aortic root expansion causing a bicuspid valve to "fish mouth" open and regurgitate under a load, so if that's the explanation, I'll probably buy it.