BAV newbie with a pain question

[AmyBL]

Hello new friends! Over the past couple of weeks, I have become familiar with many of you, and your harrowing (and often) uplifting stories. The opportunity to be connected with people with the same condition has to be one of the best uses of the internet.
Recently I was diagnosed with BAV and my aortic root is 4.5. When I saw the cardiologist a while ago, I mentioned a pain I experience periodically.His reaction seemed dismissive and it just happened again. Rareed mentioned it in her post a couple weeks ago. What happens is I feel a sharp, brief pain - sometimes in one spot in my heart and sometimes in two different spots. Then, it stops. My pulse speeds up momentarily, and then returns to normal. Does this sound like anything the rest of you have experienced? If so, did it go away after your surgery?

Thank you for your time,

AmyBL

 

[Jinger]

Sounds familiar...All I can say is you're not alone. I have no answers yet...Dr. appt the 16th!

 

[themalteser]

Hi Amy,

I am not a medical expert or anything, but I do carry the same condition as you do, with exactly the same measurement in my root (4.5cm). I have pain in my chest constantly, but cardiologists reassure me that it's not heart related at all. I don't think you should worry about it unless its severe! 4.5cm in the root is not that large and only mildly dilated in accordance with the statistics. Your pulse probably speeds up because you get anxious, and nothing is related.

Do confirm with your cardiologist though, just in case.

 

[AmyBL]

Thanks Jinger & themalteser. I will call my cardiologist right now.

AmyBL

 

[Superman]

Hi Amy,

I used to get that a lot when I was younger and before my first surgery. My description is that it felt like somebody was holding the point of a knife just at my heart, and every time I'd take a breath in - the point would stab me. It used to cause me to hold my breath until the feeling passed. I don't recall any rhythm changes with that - other than what I attributed to holding breath. If I recall rightly, it was always lower left (which doesn't make a ton of sense to me with BAV being upper middle).

Sound similar?

 

[Mentu]

A problem with symptoms

A problem with symptoms

Hi, Amy, and welcome to VR. One of the issues I've run into is that there seem to be a number of minor symptoms associated with Aortic Stenosis that are not acknowledged by our doctors. For a couple of years before my AVR I experienced, periodically, a sharp pain on the left side of my chest near my heart. As the date for the AVR approached it happened more often. To me it felt like being touched suddenly with a burning coal. After surgery it was gone and has not returned. This is certainly not proof of a cause and effect but it does seem to suggest at least an association with the heart problems but my cardiologist always dismissed it and said it was unrelated. Still, it did not reappear after surgery. Whatever the source, this is not one of the primary symptoms of aortic stenosis which is what our doctors focus upon; these are:

1. Heart Murmur - blood being forced through the smaller distorted opening of the aortic valve makes a distinctive sound on the systolic beat (ejection) when blood is forced out of the left ventricle into the aorta.

2. Dyspnea (Shortness of Breath) - insufficient blood flow through the lungs initiates congestive heart failure.

3. Syncope (Dizziness & Fainting) - insufficient blood flow to the brain results in poor oxygenation and produces temporary "shut downs" of some brain functions.

4. Angina (Chest Pain) - this is caused by insufficient blood flow to the heart itself. Poor oxygenation of the heart muscles produces the same symptoms that blocked arteries create including the radiating pain associated with "heart attack".

My own experience with my cardiologist was that he delayed recommending me for surgery until all of the primary symptoms appeared. To his credit, half an hour after I reported radiating chest pain for the first time, he called me back to say that he had set up a consult for me with a surgeon.

I think most of our companions here in VR will tell you that you are best served by being knowledgeable about your condition so that you can report to your cardio changes as you notice them. Cardiologists follow accepted protocols which suggest to them when different types of testing should be used and when they should refer patients to a surgeon. Much of the time these are adequate. It is really up to you to keep your doctor informed of the progress of your condition (marked by the development of symptoms) and how this is disrupting your life. You are your own best advocate, Amy.

Larry

 

[AmyBL]

Hi everyone, thank you for your responses. After thinking about your responses and talking with the nurses at the cardiac program I joined (like cardiac rehab, just designed for education and prevention for the newly diagnosed) it really makes sense that there could be a variety of pains I (we) can look forward to in the future. The important thing for me to remember will be to communicate with my health providers, (thank you Mentu/Larry) and try not to overreact to each unusual twitch.

Since I was diagnosed about 6 weeks ago, I had been bopping along pretty well -- not overcome with fear and feeling quite positive about the long-term prospects of this condition. Considering the operation has been in existence for many years and we all have ample evidence that there is life after surgery (thanks to this website and the courageous and generous people willing to share their struggles) I was encouraged and grateful. Then, the twitch in my heart and "here comes the FEAR!"

Superman, that really sounds like what I experience.

Themalteser, I am sorry to hear you have pain constantly! Glad it isn't heart-related. Has your cardiologist said when you may have surgery, if at all?

Good luck at the physician on the 16th, Jinger.

Sincerely,

Amy

 

[themalteser]

Hello Amy, I'm glad you're finding all the help you need and educating yourself daily on this so common condition. I've been bearing this pain for nearly 3 years now and it's mostly anxiety related pain. My cardiologist is not worried at all about my condition and I've asked many, many other professional opinions, cause I don't like to rely on just one, and they all agree, this includes Prof. Magdi Yacoub who ordered some of the tests and reviewed all my images. I'm saying all this because your measurements seems to be similar to mine.

As in regards to surgery, cardiologist dont think that I will need it for many years, if at all, but that the probability is that I will need it at some point in the future.

How about you? What does your cardiologist think?

 

[AmyBL]

"My cardiologist is not worried at all about my condition and I've asked many, many other professional opinions, cause I don't like to rely on just one, and they all agree, this includes Prof. Magdi Yacoub who ordered some of the tests and reviewed all my images. I'm saying all this because your measurements seems to be similar to mine.

As in regards to surgery, cardiologist dont think that I will need it for many years, if at all, but that the probability is that I will need it at some point in the future."

This seems like really good news -- not needing surgery for many years. Is the challenge trying to differentiate between pain because of anxiety, and pain because of heart issues?

How about you? What does your cardiologist think?

He has not said anything (so far) about timing. To be perfectly honest, after getting the news that I can't run anymore, and at some point I might need surgery, I did not pay much attention to details. I have freaked myself out reading about people who report no change to the size of the aorta and then *BAM*, symptoms and surgery! for the most part, it seems that people report having significant symptoms for a while and then they have surgery. Not like an over-night thing. I guess I will just need to trust that I will notice in time.

Take care,

Amy

 

[themalteser]

Hi Amy,

Any reason why you can't run? Mine insists that I should run, cycle and swim but to avoid extreme weight lifting.