Second-guessing the timing of a second-surgery

[Odie]

At 50, I learned I had a bicuspid aortic valve and severe regurgitation (no stenosis). I was fit and asymptomatic. Rather than wait for symptoms I opted to immediately replace my BAV with a mechanical valve.

During surgery the potential to repair the valve, rather than replace, suddenly became an option. The repair was performed, my heart was successfully tested, and I was closed up to begin the recovery process. Unfortunately within days the repaired valve was leaking, and within months the regurgitation was back to pre-op levels.

That was a lot of trouble and risk-taking to end up right back where I started. Being asymptomatic, I couldn't help but wonder if I'd been too aggressive in opting for surgery so soon? I told my doctor, "how about we wait and see some measurable heart enlargement or symptoms before we try this again?"

Now more than five years has elapsed, and I'm feeling confused. While frequent echo-cardiograms indicate no significant change in heart dimensions or EF, a few months of "flat" workouts has me wondering "is this what a symptom looks like, is this what getting older looks like, or am I just imagining things because I'm tired of waiting"?

Seeking some clarity, I did a stress test. While I exceeded my doctor's expectations I fell short of my own. Surprisingly, my doctor seemed to ignore the stress-test results and urged me to meet with a surgeon. Maybe after years of my "show me some data first" attitude she has detected a crack forming in my conviction and is now telling me what she's been thinking all along but knew I wasn't ready to hear.

Since the stress test, my workouts have been on fire. It is all so very confusing. I made an appointment with a surgeon, and then clocked a hard hour on a bike, thinking something is wrong with this picture.

 

[Protimenow]

I'm wondering why the surgeon did the repair, rather than replacing the valve. Sure, repairing the valve is, in theory, better than replacing it, and probably less expensive and less work for the surgeon, but I'm not sure that the repairs will hold up (they didn't in your case), and the valves usually keep ticking for the rest of your life. Did you give the surgeon the option to repair the valve rather than replace it?

If I was in your situation, I'd also be in a bit of a quandary. If I was functioning well, have good strength and endurance, and my heart was showing few or no signs of damage (which yours apparently doesn't), perhaps waiting until symptoms occur may be a reasonable option. OTOH, there's the issue of getting the replacement done BEFORE the symptoms progress and BEFORE heart damage shows up, and also the issue of getting this done while you're strong enough to easily recover after the surgery. AND - there's still speculation that some other type of repair for a damaged valve may eventually be developed and FDA approved, making OHS unnecessary.

I had my valve replaced when I was still reasonably young. I had a good job with good insurance. I was not asymptomatic, but, to me, it was a question of 'how weak do I have to become to need the surgery?' I had mine done when I was reasonably strong and had insurance to cover it.

It would be interesting to hear what the surgeon says.

 

[pellicle]

you can't pick this stuff, second guessing is not going to work. Be conservative in your training, don't attempt to be an athlete (because you can't be) and instead aim for the endurance end of muscle training (not the peak end). Aim for training for health not competition or looks.

Keep getting measurements and be advised by what those measurements say.

An anecdote: my wife as a girl was asked to watch the bread in the oven carefully to prevent it burning. Because she just carefully watched it she did not notice that it had turned dark brown. So continual observations can lead you to not see the changes. Comparisons over time make periods it clearer

 

[CThrock]

Agree with statements above. I have a severely leaking Tricuspid valve.. found in April if this year. Not any symptoms at the time. Surgeon is talking about repair because of putting stress on the heart and my other two valves that are mechanical. Had a TEE done and showed some enlargement of the right side of my heart. So before I have to many symptoms they want to do the surgery soon. They will not do OHS but through the groin. I am confident that the Surgeon has my best interest of staying healthy in mind.

 

[gregjohnsondsm]

I would stick with the "show me some data first" attitude that you have. If you don't hurt and can still walk up a bunch of stairs then you are good. I would not get surgery with the belief that it will take 8 min off your Triathlon time. If you are happy and healthy and pain free then don't sweat the small stuff. I had a doctor tell me once that if your heart is going to last another 15 years then something else will probably kill you first. So why take a chance on the complications of OHS if it isn't absolutely necessary for life? The most dangerous place you can be is in a hospital.
I used a simple excel sheet to track all Echo tests and validate / check for any trends. Easy to do. I also do the same for blood work. Your doctors will not do this for you. They may have your best interest at heart, but they don't do the work necessary to really provide long term care. No one is looking out for you except you.

 

[Odie]

Thanks to everyone for your comments.

Did you give the surgeon the option to repair the valve rather than replace it?

Absolutely. I'm not second guessing that situation at all. I selected my surgeon for his knowledge and experience. I'm confident he would not have attempted the repair without a high probability of success. In fact, I'm going back to the same guy for #2.

don't attempt to be an athlete (because you can't be)

I agree with your training advice but not your lack of confidence in my athletic potential.

I used a simple excel sheet to track all Echo tests and validate / check for any trends.

I use the same technique. I've gone so far as to request a DVD copy of every echo I've ever had, then I go through it myself and log every measurement; this gives me even more data than what my cardiologist provides in her report.

It would be interesting to hear what the surgeon says.

I met with him this week. He cautioned me against waiting much longer. He believes if I wait until I'm presenting classical physical symptoms then my heart has already suffered irreversible damage. The fact that I'm acknowledging something is different - in addition to what we know from the echos -- puts enough weight on the scale, in his opinion, to tip the balance over the risk of a 2nd OHS.

 

[Protimenow]

Before I had my AVR surgery, I asked my doctors 'how sick do I have to be?' I figured that I'd do better getting it when I was still strong than I would if I had waited until it got worse. They scheduled the surgery.

I think you're doing the right thing by not waiting -- as your doctor suggested.

 

[pellicle]

I agree with your training advice but not your lack of confidence in my athletic potential.

you misunderstand, its not about confidence that I couch my advice in, its in the interests of you having a maximally long duration of good health. If you attempt to be equal to "top level" you won't get that.

 

[drivetopless]

I waited and watched 12 years before surgery at 47. I had bav with stenosis. It was interesting to me in those years I was always more symptomatic right before my annual check. I ultimately relied on the data more than anything and did notice a dramatic and consistent change in my exercise tolerance that correlated with the data. Sometimes our brains and worry can create very real symptoms.

Another suggestion is to get your hormones checked...an imbalance can also give some fluctuating physical symptoms.

 

[tom in MO]

....I met with him this week. He cautioned me against waiting much longer. He believes if I wait until I'm presenting classical physical symptoms then my heart has already suffered irreversible damage. The fact that I'm acknowledging something is different - in addition to what we know from the echos -- puts enough weight on the scale, in his opinion, to tip the balance over the risk of a 2nd OHS.

When I was told I needed my BAV replaced due to stenosis, I was asymptomatic and didn't really believe I needed the surgery now. My cardiologist tried to focus me by saying "You don't want to suffer the syndrome known as 'sudden death'". The way it was explained to me by the suregeon is that you reach a point where the rate of decline increases and depending on the person can increase quite quickly. Think of a curve with a small negative slope and then reaching a point where it's a circle and you're line is falling off the cliff. He even drew the curve. Before the surgery I experienced my first dizziness spell; point taken.

After my valve was replaced, within a few weeks, before I went back to work, I noticed an improvement in my overall health. I live in a hilly area and I could walk 2x further and had more overall stamina than before the surgery. I believe that in the years up to surgery, I had gotten used to slowly declining physical performance over the years and didn't know I could do better with surgery.