Are these symptoms?

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JaneBerm

JaneBerm

VR.org Supporter
Supporting Member
Joined
Sep 6, 2008
Messages
101
Location
Pompano Beach, FL
I have been diagnosed with BAV with severe stenosis (peak valve gradient of 71 mmHg and mean valve gradient of 43 mmHg), with mild regurgitation. This diagnosis was made two months ago without any previous history and I have up to this point been mostly asymptomatic. Now that I am focused on this issue, I have noticed several small things and I would like help in attempting to determine if they are, in fact, symptoms.

I have recently experienced more of a tightness and very slight pressure on the left side of my chest. It now seems to have moved across both shoulder blades and occasionally extends up each side of my neck. It lasts for no longer than a minute or two and doesn't cause me any real distress. I had previously believed that the intermitent chest pressure I experienced was caused by indigestion that quickly passed. Could this be angina?

On just a few occasions I felt my heart "race" or perhaps beat in an irregular manner. This only lasted for approximately 30 seconds, and I attributed it to excess stress in my daily life. Is this a-fib?

My last question regards the mild regurgitation diagnosis. Are there any physical symptoms with this? I am aware that it is a diagnosis from my echo report, but I haven't been able to determine if it might exhibit itself in any symptoms.

I was diagnosed less than two months ago and advised to have surgery within the year. I will be seeing a different cardiologist tomorrow for a second opinion and have also scheduled a second echo test for next week. I am trying to not drive myself crazy obsessing over each and every possible symptom, but at the same time I really don't know what I should be looking for. The thought of having such major surgery when I feel perfectly fine, is driving me over the edge! Any help would be greatly appreciated.
 
They sound like symptoms, but could well be normal and your just more in tune to whats happening. The strange thing about the human body is it's ability to compensate. You may have lots of symptoms and never know it until after you've had surgery and see the difference.
 
Hi
cant comment on symptoms but try googleing BAV symptoms there a re plenty of articles out there on all heart related symptoms etc ,but i can appreciate the feeling of going over the edge i have the same feelings i was told last tues need mitral valve repair , i had palps these apparantly turned out to be what every one gets from time to time you may be just more sensitive to it now you could ask for 24 hour holter
good luck
Dean
 
Hello Jane ?. Welcome to the zoo ?. As Ross said these sound like symptoms but I am sure that you are more aware of your heart/body now that the diagnosis has been made (which is a good thing)? I understand exactly how you feel ? I was asymptomatic and walking through those hospital doors for valve replacement was hard. Once inside they made sure I was relaxed.:rolleyes: I always say this and often wonder if I should but I will, it really is not near as bad as you might think. Looking back I put myself through a lot of agonizing hours worrying. If you are otherwise healthily there is no reason you should not sail through. I?m glad you are getting a second opinion; if the diagnosis is the same it will help you resolve it and get ready for your big day.

This is a great place for support and to make life long friends. We are a caring bunch and again I want to welcome you to the family.
 
Hi and Welcome,
I too had a BAV and no symptoms until about 3 months before my surgery. I attributed the SOB, always tired, lack of circulation to my fingers and toes to just plain being fat and out of shape. Ooops, wrong. Had AVR (bovine valve) in May 2008 and all those problems went away. I don't feel 100% yet, but I'm gettin' there. Yes, go see a second doctor and even a third if you feel the need. That way you are in control of your health and future. Good Luck on your quest and your surgery if it is deemed necessary.:)
 
Jane,
Welcome!
Cooker put it so well!
I remember telling my primary doctor the year before that I hoped I would have some symptoms because it would be so hard to consider the surgery without them. Now (nearly a year later) I'm wishing I'd had it sooner! In retrospect, several discomforts have disappeared. My gradients were about the same as yours at surgery time--the surgeon said the valve was worse than he thought.
 
If you haven't had a CT scan with contrast or MRI yet, I strongly advise you to do this to evaluate the size of your aorta since ascending aortic aneurysms may sometimes be present with a bicuspid aortic valve. At a minimum, you'll be able to get a baseline measurement of your aorta to compare with future measurements. If aneurysmal dilatation of your aorta is found, you'll want to take care of this and the valve in the same surgery.
All my best,
MrP
 
MrP said:
If you haven't had a CT scan with contrast or MRI yet, I strongly advise you to do this to evaluate the size of your aorta since ascending aortic aneurysms may sometimes be present with a bicuspid aortic valve. At a minimum, you'll be able to get a baseline measurement of your aorta to compare with future measurements. If aneurysmal dilatation of your aorta is found, you'll want to take care of this and the valve in the same surgery.
All my best,
MrP
Click to expand...

This is very good advice. CT or MR with contrast, looking for aortic dilation is a good idea. They found my aortic dilation via my yearly CT with contrast and now my cardio can monitor it and have it fixed if or when it needs to be.
 
Sounds like symptoms, but could also be anxiety, which would be completely understandable after such a shock. I, like others, didn't realize I had symptoms until after I recovered from the surgery and noticed things like not getting winded climbing a flight of steps, being able to sing and hold a long note without grabbing a breath, etc. Since I went 22 years from diagnosis to surgery, I really didn't know what it felt like to be healthy.
 
You are severely stenosed and your heart is working harder than it should simply to keep you alive, never mind what it takes to maintain circulation for an active lifestyle. Now, honestly do you think you could carry on without symptoms?

Denial kills.
 
pamela said:
You are severely stenosed and your heart is working harder than it should simply to keep you alive, never mind what it takes to maintain circulation for an active lifestyle. Now, honestly do you think you could carry on without symptoms?

Denial kills.
Click to expand...

Woe easy there Pamela. I can't think of one of us that didn't ask ourselves the same questions. It could be symptoms and it could also be that she is just psychologically tuned in waiting for them. The only way to know for sure is to have the tests, preferably a TEE rather then an echo, but tests nonetheless.
 
Welcome to our World Jane !

A BIG problem in waiting for symptoms is that many patients can have serious damage to their heart before they experience symptoms. Many of our members were in that very situation. The BEST approach is to be thoroughly tested (Echo, TEE, Catheterization) based on the progressive results (i.e. look at the Numbers).

Did you get a copy of your EchoCardiogram Report?
If not, I strongly encourage you to do so (and all other tests as well).

Your Gradients are elevated. I'm not sure what the usual gradient numbers are for referal to surgery. MANY Cardiologists and Surgeons recommend surgery when the Aortic Valve Effective Area is 0.8 sq cm or Less.

Since you have BAV, I also urge you to read through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of good and pertinent information on those related issues.

You may also want to start interviewing Surgeons, preferably ones with considerable experience doing Aortic Surgery which is another level beyond 'mere' Valve Replacement. Such surgeons are usually found at Major Heart Hospitals such as Brigham and Womens or Mass. General Hospital, both in Boston.

When it comes to timing for surgery, I think the surgeon's have a better grasp on recommending timing to produce the best outcome.

Just remember, everyone here has either been through it (and survived) or is a family member of a survivor. If we can do it, SO CAN YOU!

'AL Capshaw'
 
Ross said:
Woe easy there Pamela. I can't think of one of us that didn't ask ourselves the same questions. It could be symptoms and it could also be that she is just psychologically tuned in waiting for them. The only way to know for sure is to have the tests, preferably a TEE rather then an echo, but tests nonetheless.
Click to expand...

I'm not pushing surgery without a second opinion, Ross. I simply remember the eight years I spent excusing my symptoms so that I didn't see a doctor about my tingly hands, SOB or flutters until finally, I had a complete physical at 40 that sent me to a cardiologist.

A very significant factor in sudden cardiac death (last I looked) is undiagnosed/untreated valve and aortic problems. I don't think it's unreasonable to say, "Denial kills."

So, get the tests and then go shopping.
 
It is scary to read something as severe as "denial kills", but it can happen.
My symptoms had steadily increased so that I thought I was just aging. I had yearly echos and still denied how bad I was feeling. When I finally asked for a stress echo a different cardio showed up....she looked at the echo and promptly cancelled my test because there was a good chance that I could "drop dead". While I was crying she made sure to have it noted that I was not to drive a vehicule any longer and endanger others.
A few weeks later I had OHS and the cath showed a bonus: enlarged aorta.
Don't be shy to have additional tests.
 
Hi again,

I did not see this thread when I replied earlier to the recent thread. These are symptoms and you are realizing them more now. For your peace of mind, check with other cardios and have more tests done.

This is a very difficult time and be easy on yourself and look at the positive outcome later.

Good luck and with my prayers, :)
 
Symptoms and Second Opinions--Does Brigham & Womens use a team approach?

Symptoms and Second Opinions--Does Brigham & Womens use a team approach?

Thank you for all of your thoughts and input for my situation. I've come to realize that I do have some symptoms, just not the standard documented ones. I'm beginning to think that mine are more on the mild side and have been identified by a few folks as "women's" symptoms. These may also be because I can't do strenuous exercise that might bring on the more documented things like SOB or dizzyness. I've had a problem for several years now with carpel tunnel and had noticed a sharpe increase in the number of times I had those symptoms lately. This is especially true when I am sleeping--even with splints on both hands. After reading your replies and additional threads, I'm thinking that this could be one of my main AV symptoms.

I have an appointment with both my internist and cardio doc next week and I'm trying decide what I should be asking at that time. Since my post polio makes me a poor candidate for an exercise stress test, which would be the most logical step after the echo, I'm trying to decide if I should be asking for a followup with a CT scan or MRI, before I move on to the cardio cath, which seems like the last step before surgery.

Last week I had a second echo (the 2nd opinion cardio doc thought that was way too soon after the first one, with only 2 months between them) and I haven't gotten the results on that test yet. These conflicting opinions are driving me crazy and I keep wondering if I should go to Brigham and Womens in Boston. Does anyone know if they use a team approach--anything that would eliminate the confusion I'm hearing now--where the doctors actually talk to each other and make decisions based on their consultations?

I'm so happy that I've found this site and so very grateful for all the wonderful folks here who are so willing to share their experiences and knowledge. Everyday I learn a little more and it certainly helps me to feel more in control of the entire situation.
 
JaneBerm - heart stuff is very scary - I agree. And frankly it would seem to me it is better to choose your destiny versus it choose you. What I mean by that is regardless of whether they are symptoms or not - if you have severe stenosis and regurg - I'm no surgeon but it would seem to me something should be done.

I've basically took things into my own hands - my cardiologists were telling me I could stay on amiodorone (pretty toxic drug) and have the surgery later. I've gone ahead and researched -consulted with two cardio-thoracic surgeons and have my third and hopefully final consult next week for MVR and Maze. I'm controling my destiny while I still feel good, relatively asymptomatic into my own hands and based on my next consult will have surgery when it is good for me and my family. Cardio-thoracic surgeons are the ones I would consult with regarding the "right" timing for surgery. I read a brief recently from a cardio-thoracic surgeon's advisory panel and they said that there are times when they would have rather had the patient much earlier for surgery - and the cardiologists were "saving" the patient from surgery in their words. I have found that I have to be my own advocate.

Good thoughts and prayers sent your way as you make your way on this journey.
 
Jane -

Just a reminder that it is the Surgeons who have the most experience FIXING Valve Problems. There isn't much that a Cardiologist can do beyond Diagnosing the problem, medicating to postpone the inevitable, and refering you to a surgeon that they know.

With your issues, I think you need to find a Surgeon with experience dealing with BAV and Connective Tissue Disorders. Experience with Polio Survivors would be a plus.
 
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