Is it really that time?

[Scotty]

Hey folks,

So I may well very soon go under the knife for the first time. I have been diagnosed with a BAV, with "significant" regurgitation. Ive seen two cardiologists, one says he'd like me to get it replaced ASAP. The other says hold, on wait, get checked every so often because its not terrible yet. Both agree it would be ok for me to get it done now, but obviously I wanna hold off if possible. Does anyone know when, generally speaking, it's "time"? I have mild symptoms. Occasional tightness in the chest, a little shortness of breath here and there, but my LV seems to be enlarged. I know most of us are not doctors, but I'm curious to know what your doctors have told you or what you've read about knowing when it's time. Any references to sites with specific info are also appreciated, but just an experience or info will be great too! Thanks!

 

[epstns]

Hi, Scotty and welcome to The Waiting Room - the virtual room where many folks are waiting for their own turns at valve surgery. My own case is somewhat different than yours -- I had aortic stenosis in which my valve didn't open all the way, but I didn't have any significant regurgitation. I didn't have any of the major symptoms, more like just slowing down far more than a guy my age should have experienced.

My diagnosis and treatment aren't the point here, though. My point is that most of the cardio's I've seen tell us that once a patient begins to experience the cardinal symptoms (shortness of breath, fainting, chest pain), it is time to act. The fact that the symptoms "aren't too bad" doesn't mean that damage is not being done to your heart. Symptoms are a sign that the time is near. So is LV enlargement. If you act, replacing the valve sooner rather than later, odds are that the LV enlargement will reverse as your heart heals and you will do better after recovery. The longer you wait, the greater the chance that some form of irreversible damage will be done.

I'm not trying to scare you - just telling you what I've been told by docs I trust. Since you have two opinions that differ, you will have to either get a third, or decide for yourself. If I was in your position, I would at least consult with a couple of surgeons and see what comes of that.

 

[anutherbuddy]

My husband has been in the waiting room for nearly 10 years with BAV and more recently MV prolapse. He has never had any symptoms at all but the doctors now say it's time for surgery and it's been scheduled for Sep 12. One doctor told us his "ideal" would be that my husband never has any symptoms before and then feels just as good after he fully recovers from the surgery. They have said it's hard to explain to someone who feels fine that they need this kind of drastic corrective surgery but assure us that sooner or later he would feel terrible if nothing is done and by then it is more likely there would be permanent damage done to the heart. I've been reading posts on this site for a couple of years and the common theme has been - if the doctors say do it - get it done.

 

[Guyswell]

Scotty,

I agree with epstns. I'm one of those patients with permanent damage. Persist in asking your cardiologists about the possibility of other complications developing as a result of waiting.

Every patient's situation is different but here's what happened to me. I was born with a bicuspid aortic valve that was discovered when I was a baby and we watched it for 41 years. As my aortic valve function worsened and developed more regurgitation, my left ventricle became thickened and enlarged and I developed a left bundle branch block- LBBB (a problem with the electrical conduction system). My ascending aorta became dilated and I started developing symptoms when exercising so we proceeded to surgery based on the symptoms and the dilated aorta. During surgery, my surgeon discovered extensive calcification of the valve and removed calcium deposits that had started growing into the surrounding muscle. I'm pretty sure that this is what damaged the electrical system and caused the LBBB since the aortic valve is so close to the AV node. During surgery, I developed total heart block that resolved itself. Nevertheless, two years after surgery, I was having episodes of fainting caused by bradycardia (slow heart beat). As a result, I received a pacemaker that paces about 10% of the time. My left ventricle regained much of its function after surgery but I still have thickened walls and abnormal stiffness of the muscle. I understand that electrical problems can also be caused by the surgery itself but I'm convinced that we could have acted sooner and might have avoided the LBBB, the pacemaker and the permanently stiffened left ventricle.

You may want to consider the second opinion service offered by the Cleveland Clinic. They do more aortic valve replacements than anyone else in the country. I’m pretty sure they can review your medical records without you having to travel there.

 

[Eva]

I, too, agree with all That was said above.

It is very true that "each patient's situation is different". In my personal situation, my echoes revealed severe aortic regurgitation seven years before my surgery was recommended. Also, my LV was enlarged for a few years, yet it did not alarm my cardio. Luckily, it shrunk back to normal size right after the surgery! My left atrium did not shrink back neither it will in the future ... it is enlarging!

I tolerated light shortness of breath for two years before they became more severe. Three months bfr my surgery was recommended, my family members and friends noticed them while we talked on the phone, and I felt them while sitting down nothing. Still, I was told to 'start thinking surgery', which took me six months.

If I could go back in time, I would have seeked a surgeon's advice two years earlier than my cardio recommended surgery...when my fatigue started to increase and my activity started to decrease!

Websites like CC, MAYO CLINIC, NIH, STANFORD are good sites among many others.

Good luck.

Seek another opinion if you can afford to and ask for copies of your echoe reports to compare results.

 

[AgilityDog]

Please don't wait for more symptoms. I'm another with permanent, pretty severe damage. Mine occurred in 5 months from MV prolapse to Class IV heart failure requiring replacing 2 valves and repairing a third, a-fib requring a maze and pacemaker, etc. etc. etc. Talk about a bionic woman!
If my mvp had been diagnosed when I first became ill (bronchitis in late March, severe difficulty breathing in Mid April, diagnosis in late August, surgery Sept. 5) rather than months later, I would probably have avoided much of the damage.
At least you KNOW what is wrong. No one is telling you you have left-over bronchitis symptoms instead of heart problems.

 

[jpattillo]

Once I was in the window where I could go ahead and get it done, I did. Best decision I made, especially considering the operative approach I chose. The few months of waiting was much worse than the recover. I couldn't imagine delaying it for years. The anxiety of waiting would not be worth it and the chance for permanent damage (whatever that is) wasn't worth it for me. I had surgery on May 8 and ran 10 miles last week. I also ran six miles on Wed. at a 8:15 per mile pace. I feel more normal than ever (and I thought I felt fine before).

 

[Scotty]

Thanks for the advice everyone! I am still a little in shock as I have only even known of the existence of this condition for about two weeks. The first cardio was pushing hard to get me on the table (like within the next week or two) and the other one said wait. Thing is I feel fine, and am getting very mixed signals from different docs. This helps though. Thanks!