Need Advice

[Leah1967]

Hi, I am new here and have some questions that hopefully some of you can help me with. For the past 12 years I have suffered with Coronary Heart Spasms (Angina).I am 51.I Have had issues with syncope in the past. Been on Ranexa and use nitro pills when needed. I see my cardiologist once a year. 6 years ago I had an echo which showed that I had some stiffness in the LV. The doctor stated that it was from the spasms. And everything was good. Once every year or two I end up in the ER because I can't get the spasms to stop. The last time this happened was in February 2018. The hospital did a CT with contrast to check for an aneurysm. In the notation it stated that I had mild cardiomegaly. But the attending doctor never mentioned it or seemed concerned nor did my cardiologist. All was good. Why is that? Anyhow, I had my follow up two weeks ago. And I had mentioned to my doctor that I have been having some intense palpation's that when they happen I lose my breath. This kind of palp's have never happened like this before. There was one palpation's that scared me to death! Intense pounding and I gasped for my breather upon each pound.The doctor ordered me a halter monitor that I have been wearing for the last two weeks. He also ordered an Echo. He did mentioned that I had a heart murmur which I knew I always had, but he seemed perplexed when he told me. I said to him didn't you know I had a murmur? He said yes, but now he hears it in the aortic position. OK, so that made me very concerned and the dummy that I am didn't ask him any questions! UGH!

So, you know that I went home and started to do a google search and have been nervous since then and can't wait for my Echo this Friday! I am fortunate that the doctor will be going over the results then. And while I was typing this, the doctors office just called and said that the doctor will answer all of my questions when I have my Echo. He had mentioned that the murmur was louder and at the aortic position, which leads me to believe that I have an issue with my aortic valve. Can anyone relate? does anyone else think I am correct in thinking my valve may be going bad? and is it possible to have "two" murmurs? and if not, why did it move? And one more question, can this valve have been the culprit behind my angina? 12 years ago I did have a special CT scan that showed I had ZERO calcification's. I did have some issues with my triglycerides and all that other stuff, with a change in diet in 2017, the last two years my blood work has been great.

Sorry for the very long post, just very concerned.

 

[Eva]

My two-cents advice is to write down all of your questions so you won’t forget any. You may also seek another opinion if you feel he didn’t/couldn’t answer you satisfactorily!

All I can answer is that one weak valve will affect the functioning of another valve over time. Hope someone else has more answers.

Good luck and keep us posted.

 

[honeybunny]

Welcome, Leah. Sorry your concerns sent you here but this is a wonderful group of people who will support you through your journey.

I cannot address the medical questions you've raised. But I can tell you that my PCP commented that I had a heart murmur a few years ago (I forget exactly when) during a routine checkup. She made no other comments about it. Cut to May 2015 when I was diagnosed with a calcified (moderate to severe) aortic valve and advised it needed to be replaced. Only then did I learn that a murmur is an indication of a bicuspid valve. (I've since advised my family to watch for this in their children and grandchildren.) So it is possible that something similar is going on with your valve.

I ditto Eva's advice. Write down all your questions and concerns and plan for a long chat with your cardio following the Echo. In my case, the echo I had that May indicated the valve was bicuspid, but I had to have a TEE (transesophageal echo) to verify this and the severity of the stenosis. You may need the same.

I have not seen anyone on this site proffer a connection between angina and valve disease. pellicle and Paleowoman are (IMO) the best "researchers" we have; perhaps they can steer you in a direction that will provide answers. But again...list your questions and be prepared to take exhaustive notes. I suggest having someone go with you because it's good to have another pair of ears to catch things you might miss.

Sending positive energy your way for answers and a good path forward.

Hugs,
Michele

 

[Paleowoman]

Hi Leah - following from Michele's post, I've never heard of a connection between angina and valve disease on our forum, although I have heard that when aortic valve stenosis gets very bad it can lead to symptoms of angina. I'm not sure if that is the same as the angina a person gets from coronary arterial disease.

Murmurs: the heart murmur from my bicuspid aortic valve was first heard when I was 25 but I didn't get to need valve replacement until I was 60. I now have a much louder murmur (!) because the effective orifice area of my replacment valve is small so there is a lot of turbulent blood flow, more I suppose than when I had a bicuspid valve.

I'm sure you will get more answers when you have the echo. Go armed with questions. Do let us know how it goes,

all the best !

PS - looking at the report from when I was 25 when the murmur from my bicuspid valve was first heard, the cardiologist wrote the second heart sound was absent which indicates bicuspid aortic valve - so in that instance the murmur was the fact that a particular heart sound was absent.

 

[pellicle]

Hi

Hi, I am new here and have some questions that hopefully some of you can help me with.

the specifics of the questions are a bit out of my knowledge, as I've just had heart valve surgerie(s) and an aneurysm.

However as one member has already suggested and as you seem aware of:

...so that made me very concerned and the dummy that I am didn't ask him any questions! UGH!

asking questions is important, as is also being prepared.

I don't think you should beat yourself up about that missed opportunity, instead call it the cost of education. Mistakes are always good opportunities to learn

So, you know that I went home and started to do a google search and have been nervous since then and can't wait for my Echo this Friday!

Just be careful about what you find on google, think about "where you found it" and do you know what it actually means.In research the most important thing to keep in mind is "veracity"

the next is applicability (does it apply to you).

Luckilly (well you may not think so now) this is all just the beginning and you've got plenty of time to understand, question and come to terms with what's actually happening ... and that's something you're not quite sure of yet.

I agree ... Friday will be a good time to gather more data and start to put the puzzle together.

...Can anyone relate? does anyone else think I am correct in thinking my valve may be going bad? and is it possible to have "two" murmurs?

I'm of the view (with the scant information available here) that its most likely an aortic valve issue which was mis-diagnosed earlier. I suspect it was mis-diagnosed because its not producing symptoms, which suggests that its still early days and you have plenty of time to research it.

one more question, can this valve have been the culprit behind my angina? 12 years ago I did have a special CT scan that showed I had ZERO calcification's. I did have some issues with my triglycerides and all that other stuff, with a change in diet in 2017, the last two years my blood work has been great.

well its possible that the diagnosis of Angina was also an error and just went away as symptoms come and go. That you had a CT scan showing no calcification is itself also good. If you had a valve murmor its likely there will be calcification happening too. 12 years ago is a long time and much can happen in that time.

So I propose you play it calm, gather facts, write it up, try to make correlations between what seem to be disparate facts and (just in case you missed it) write it all up (and don't lose that).

Best Wishes

 

[epstns]

Leah - Not knowing that you have a murmur is, unfortunately, all too common.

The way I initially learned that I had a heart problem was when doc I saw for an unrelated issue asked me, during an exam, "How long have you had that heart murmur?" He then went on to say "I don't want to alarm you, but I advise you to have that evaluated sooner rather than later."

Talk about dumbfounded! I had, just two weeks before, been given a completely clean bill of health by my internist. Needless to say, I sought not only a cardiologist, but also a new internist.

In these cases, knowledge is truly power. Now that you know some of the particulars, you can begin the learning process to find out what is really going on. We learn little by little. Fortunately, except for a few really severe cases, we have the luxury of time to learn, interview doctors, and get the advice we need to plan our own care. Make no mistake - you can be in charge of your own care (presuming you are in The States). Doctors may advise you, but you are the one who can choose which advice to follow.

First, though, you need to get to the bottom of your current issues so that you can know if you need to act soon or if you have some time to decide. Do keep us posted of what you learn. Odds are that somebody here has been down a similar road, and can help you process it all.

 

[Leah1967]

Thank you all for your responses, I will come back with more details after Friday.

 

[rich01]

"I have been having some intense palpation's that when they happen I lose my breath"

Are you in the same location when they happen or different locations?

I woke up several nights with those symptoms. I finally traced it to emf from a space heater in my bedroom. I had the same thing happen when I used a different space heater in my RV. In my bedroom, the electric wire ran inside the wall just inches from my head. In the RV the same as the shore power came into the RV right under where my head is when I sleep. I know emf can cause health problems, but I wonder if the calcium in our aortic valve makes it even worse.