When should i plan for surgery?

[vivekd]

I'm 48 yr old male living in Atlanta with Congenital Bicuspid Aortic Valve. I've been going for yearly ECHO, ECG and Stress Tests at WellStar Atlanta. Last November my cardiologist told me to talk to Cardiac Surgeon for pre-operation surgery.

My Cardiac Surgeon asked for Cardiac CT Scan with Iodine insert to check for Aortic Anneurism. I'm very fit, very active (hit gym 5 days/week, running/lifting weights etc) and have been mostly asympotomatic.

Last month, I had an instance of PreSyncope during weight lifting. I've stopped lifting heavy weights now, but have not told doctor about it. I think my mind is playing games with me, because of all the results.

I run 5 times a week and wanted to keep an eye on my cardiac capacity to identify when would i have to go for heart valve replacement. My cardiac surgeon says that i would need to go for an operation in next 2 yrs. I'm supposed to go for my next checkup in november 2016.

Should I wait for any symptoms, reduced aerobic capacity or pre-emptively go for valve replacement (On-X)?
Also, my resting heart beat is 47 bpm.

Any help/advice/suggestions will be really appreciated.

I've attached my last ECHO Stress Test and Cardiac CT results.

Thanks.
--- Vivek


Here are my latest ECHO results:

· Left Ventricle: The left ventricular systolic function is normal,
ejection fraction is 55-60%. The left ventricle cavity size and wall
thickness is normal. The left ventricle wall motion is normal. Left
ventricular diastolic function is normal.
· Right Ventricle: The right ventricle cavity size and systolic function
is normal.
· Aortic Valve: Suspect bicuspid AoV with ballooning. There is severe
aortic valve stenosis present. Mean pressure gradient: 42 mmHg. Aortic
valve shows mild to moderate regurgitation.

AO valve area VTI		1.16
AO valve area Vmax		0.98

Latest Cardiac CT Scan results

ANGIOGRAM CHEST WITH IV CONTRAST
The aortic valve shows severe thickening. The thoracic aorta is otherwise unremarkable; there is a left-sided three-vessel arch. Minimal to no vascular calcifications are detected.

Aortic annulus: 2.2 x 2.8 cm
Sinus of Valsalva: 3.0 x 3.2 cm
Sinotubular junction 2.8 by X 2.9 cm
Mid ascending aorta 3.4 x 3.3 cm
aortic arch 2.5 x 2.7 cm
Descending thoracic aorta 2.2 x 2.3 cm
[h=2]Impression[/h] Dramatic thickening of the aortic valve, with thickness measurements as large as 7 mm. Otherwise unremarkable exam.

Last Stress Test Results

NORMAL STUDY:

1. Good exercise capacity
2. Appropriate blood pressure response to exercise
3. No exercise-induced chest pain
4. No ischemic EKG changes with exercise
5. No arrhythmia

RECOMMENDATIONS:
Given asymptomatic status, good exercise capacity, and
Normal LV size and function, will continue to monitor severe
AS. Pt advised of no competitive sports.

Exercise Treadmill Test - Bruce Protocol

 

[AZ Don]

Your Dr's can advise you better than we can, but you need to tell them about symptoms. Syncope can be a symptom of of severe AS, and so I assume presyncope may be as well. Symptoms are generally an indication for surgery. FWIW, I tried to figure out my numbers, and I felt that the Dr. was more optimistic than the numbers, telling me that my heart functioning better than the numbers imply. I got a 2nd opinion and was told the exact same thing. I think it really takes a cardiac professional to give a good interpretation of the test results.

 

[Paleowoman]

Hi - I was very fit pre surgery, had no symptoms at all. I had no LV hypertrophy, ejection fraction was excellent, my heart was in good condition - the fact that I did weight lifting even showed on the echo ! My aortic stenosis was critical though so I went ahead with surgery on cardiologist's and cardiac surgeon's advice.

Definitly tell your cardiac surgeon or cardiologist that you had an instance of pre syncope as that is not a good sign.

 

[almost_hectic]

My cardiologist told me I was due for surgery in a year or two. I had no symptoms and didn't believe him or like him. So I found a new cardiologist who redid the echo and said I wasn't a year or two from needing surgery I was more like a month or two!! After my surgery my surgeon said I was pretty lucky I even made it to surgery that I was in pretty bad shape. All with no symptoms even.

 

[Zeke]

Yeah I had similar test results as you. Didn' t lift much anymore but did cardio 4 to 5 times a week. I worked 2 jobs and always could do more than the aveage guy. My cardiologist who watched my BAV for 14 years always said " when it is time I will tell you , and don' t argue with me" . Well he never got the chance ,passed away two years ago. Dr Carnivale in Providence. Rest in Peace . His replacement immediately told me I should have AVR surgery . I didn' t believe him . Waited a year ,then got a second opiion . They cardiac cath. Then told me the same thing. I still thought I had no symptoms but was just getting old, I was tired alot more than normal. All of a sudden I was just the average guy..
Well ,got it done 4 weeks ago. Dr Signh who has done 12000 open heart surgeries said " that was the worst valve I have seen in ten years." . I am excited about prospect of feeling even better! Thats my story hope it helps alittle. I struggled with the decision as well. Good luck

 

[vivekd]

Thanks everyone..

I've stopped or reduced lifting heavy weights, slowed down my cardio workouts (I had been going to Orange Theory Fitness) and started making notes of how i feel during running/workout.

I'm scheduled to go for Stress test in March 2015 and plan to share my findings with the doctor. At that time, I am planning to ask for second opinion with other cardiologist at Piedmont hospital.

 

[dornole]

You are going to call your dr's office and tell them you had PreSyncope, yes?

I would not like to be you and admit "oh yeah that happened . . . a month ago" But you need to bite the bullet and call. The next second the office is open. Bad data = bad decisions!!

 

[Tez23]

Why wait until you've got symptoms which reduce your day to day wellbeing though? I had a congenital aortic stenosis and so have gone through the process of regular check ups as a matter of course. At one particular appointment, the cardiologist told me the valve was deteriorating and I needed surgery (non-urgent admittedly) - I was neither feeling or displaying outward signs or symptoms anything was wrong - that was 1996.
Similarly in the Spring of 2015, despite feeling no ill-effect whatsoever, I was diagnosed with an 6cm ascending aortic aneurysm - scarily I'd been obliviously walking and riding 700k across Northern Spain the Summer before (some big hills!).

In conclusion, I'd say that you never know what is around the corner or how fast things can deteriorate. Be guided by your surgeon and cardiologist certainly, but if the opportunity is there and the timing right, why delay these things?

 

[Superman]

The heart is a muscle, and permanent damage can be done. You can survive a fairly long time with a bad valve, but your heart has to work that much harder to get your body the oxygen it needs. The harder your heart has to work, the more potential for damage. Better to listen to your cardiologist and surgeon. Get a second or third opinion if you must. But when it's time, take their word for it, even if you don't "feel" like it. Nobody ever "feels like" getting heart surgery.

 

[vivekd]

Thanks everyone for responses. I just left a message to the nurse to schedule an appointment with my cardiologist.

 

[epstns]

Vivek - You are very much like I was when I was first diagnosed at around age 51 or 52. I was a very fit runner and never felt that I had any heart issues, until that one doctor asked me "How long have you had that murmur?" I had it evaluated and was diagnosed with moderate-to-severe aortic stenosis.

Over the next 10 years or so, we just watched it progress. I, too, was asymptomatic, enjoying the gym, cycling, running, and generally doing all the things guys 10-15 years younger than I could do. Gradually, though, I began to feel more tired. I also kept an exercise journal so that I could watch for any deterioration in my exercise tolerance. I did not really note any decline until I was "statistically" ready for surgery. At that time, my cardio said that although my valve was small enough that the insurance companies would approve surgery, he could not yet in good conscience recommend surgery. I was, as he put it, just not really affected by it and had no clinical symptoms. He said "When it is time for surgery, YOU will tell me, not the other way around." Eventually I got tired of being tired. I discussed it with my cardio and we started planning the process. I decided in December that I was ready, and had surgery at the end of the following February. I really haven't looked back. Even though I am (obviously) older now, at almost 5 years out from surgery, I have better exercise tolerance than I had prior to surgery. I feel great. My only limitations (in exercise. . . ) are that I cannot run any longer (my knees decided that) and I cannot exercise to really high heart rates any more due to the combination of my taking a beta blocker and my having a pacemaker.

As I was getting closer to my valve surgery, my cardio did tell me to cut out the heavy lifting and to lift lighter weights at higher reps than before, to maintain muscle mass and tone. He also told me to avoid any sports that had "high dynamic range" where you went from resting to extreme exertion in an instant. So, I could run/jog, but no football, baseball, etc. Tennis was questionable, but I don't plan tennis anyway.

Also, Vivek, I must ask - Are you a college professor? and Are you a recent transplant to the Atlanta area? I ask because I "met" another Vivek on another board and wonder if you are one and the same. I don't want to pry, but if you are, welcome!

And, finally, welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. Make yourself comfortable here, visit often and ask all the questions you want to. The folks here are about the most knowledgeable about valve surgery and issues, and they are very willing to share their knowledge and experience.

 

[vivekd]

Thanks Steve for your sharing your story. I'm the fittest 48 yr old person (I know), nobody can tell that I'm 48, since i look 29-30 and act like one as well. I moved from Silicon Valley (SunnyVale/Santa Clara) to Atlanta 12 yrs ago. I'm an IT entrepreneur and I doubt I can live without being active (Running, Lifting Weights, Fitbit Challenges, Orange Theory Fitness, and playing Cricket). I've stopped lifting heavy and already started doing light weight / more reps. I never did that before and have been pleasantly surprised with the results (especially with the muscle definition)

I've a congenital bicuspid aortic valve and have been going for check ups for last 15 yrs. Every yr, we do 1 Stress Test, EKG and Echo. My cardiologist always thought that I was lying, when i told him that I was asymptomatic. Last Echo showed my gradient as 42 and that's why my cardiologist recommended me to Cardiac Surgeon, who then asked for Cardiac CT with Dye to look for aortic anneurism. They did not see anything special there except Dramatic thickening of the aortic valve, with thickness measurements as large as 7 mm. Otherwise unremarkable exam.

And suddenly 2016 comes and I started having symptoms, 1 presyncope instance during weight lifting, my cardiac capacity has gone down in last 2 weeks. I stopped going to Orange Theory Fitness as a precaution (I never got doctor's approval before that). I'm keeping track of my experiences, so that I can have informed conversation with my cardiologist.

I was hoping that I wont have to plan for surgery for next few years, but my cardiac surgeon told me that i would not last more than 2 yrs without the surgery. I may have to go for surgery this year.

I'm too scared (even thinking about it) to share that my mother in india.

 

[vivekd]

Talked to my cardiologist today. He did an EKG and schduled 24 Hr Holter monitoring early next week and Bruce Protocol Stress test week after. Hopefully, these tests will explain reason for dizziness, lightheadness.

 

[epstns]

Talked to my cardiologist today. He did an EKG and schduled 24 Hr Holter monitoring early next week and Bruce Protocol Stress test week after. Hopefully, these tests will explain reason for dizziness, lightheadness.

That's a good approach - find out all you can to know if the pre-syncope is related to your valve or another cause. If it is the valve, it is likely close to time for surgery. At that point, a lot of the anxiety of waiting is over. What you need to do next, then, is to develop your plan. Decide who your surgeon will be, where your surgery will be done, which type of valve you prefer, when it will be done, where you will go after for recovery, etc. As an IT pro, you probably can see the similarity between my recommendation and a typical project plan at work. This is intentional. Once you have a good plan and are comfortable with it, "all" you have to do is to work the plan. No more worries about what to do next, etc., Just do what is planned next and you will most certainly come out the other side of things in better shape for the long run. It will also be easier to talk with your mom once you have a clear idea of what you will do, when, where, etc. It will help, since your sense of confidence in your plan will show through as you speak with her. Confidence is contagious.

I'd advise you now not to worry about what this means for your physical conditioning after surgery. It will all work out - at least it did for me and for many others. In my case, I hit almost all the speed bumps on the road to recovery, so it took longer than it did for some others. It didn't help that I was 63 at surgery time, but it did help in a big way that I was in great shape for my age prior to surgery. The first few months after were rough, but by 9-12 months out, I was in better shape than before surgery, and now (almost 5 years out), I'm in even better shape. You'll do fine.

Hang in there. We'll be here for you.

 

[almost_hectic]

If you know you have a BAV and are already experiencing symptoms... Id start planning for surgery now. Whether its six months away or whatever. The time will fly, trust me. Get used to the idea and tell your loved ones so they can prepare as well. I wouldn't put off such an important surgery, theres nothing that can be gained by waiting, nothing at all. Just get it in your mind that its time and prepare mentally, physically and medically (finding right surgeon and so forth).

 

[cldlhd]

Yeah I had similar test results as you. Didn' t lift much anymore but did cardio 4 to 5 times a week. I worked 2 jobs and always could do more than the aveage guy. My cardiologist who watched my BAV for 14 years always said " when it is time I will tell you , and don' t argue with me" . Well he never got the chance ,passed away two years ago. Dr Carnivale in Providence. Rest in Peace . His replacement immediately told me I should have AVR surgery . I didn' t believe him . Waited a year ,then got a second opiion . They cardiac cath. Then told me the same thing. I still thought I had no symptoms but was just getting old, I was tired alot more than normal. All of a sudden I was just the average guy..
Well ,got it done 4 weeks ago. Dr Signh who has done 12000 open heart surgeries said " that was the worst valve I have seen in ten years." . I am excited about prospect of feeling even better! Thats my story hope it helps alittle. I struggled with the decision as well. Good luck

12,000? That's 400 a year for 30 years!
Vivekd: Telling your mom might be difficult but I imagine if you keep it from her when she finds out you did she won't like it. It's difficult I know I had to tell my mom about my diagnosis 2 months after my Dad died due to heart issues.

 

[vivekd]

I'm mentally prepared for valve replacement (probably 2016 depending on results in next 2 weeks). I think that I've done lot of home work and prepared to go with mechanical valve (On-X). I'm really puzzled/surprised that within 2 weeks I've gone from completely asymptomatic to few pre-syncope/dizziness/vertigo symptoms in 2016.

I need to figure out a way to tell my mother about my symptoms (probably after my holter monitoring and stress tests results).

I'd few questions about things to do before surgery:

1) Do you pay your loans (car/home) before surgery?
2) Do you sell your stocks/options/mutual funds?
3) Do you need to setup Power of Attorney?
4) What about living trust for your kids etc?

 

[vivekd]

I'd an initial meeting with my cardiac surgeon Dr. William Cooper @ Wellstar kennesaw. He answered all of my questions and was pretty diligent answering my questions. Has anybody done valve replacement in Atlanta. Not sure, how to compare different cardiac surgeons.

 

[Paleowoman]

II'd few questions about things to do before surgery:

1) Do you pay your loans (car/home) before surgery?
2) Do you sell your stocks/options/mutual funds?
3) Do you need to setup Power of Attorney?
4) What about living trust for your kids etc?

No to all of those questions !

It sounds like you're worrying about your mortality. It's only natural to worry about that prior to surgery but the risks of it are very low. Ask your cardiologist and cardiac surgeon what are your risks of mortality.

Re your mother - does she know you have a valve defect - I assume you have BAV or damage from rheumatic fever ? The surgery is to save your life so that's how I personally would put a positive spin on it.

PS - I made sure my husband had all my important telephone numbers, email addresses and account numbers so that he could deal with things when I couldn't post surgery. He also gave updates to all relatives and close friends.

 

[vivekd]

Thanks @Paleogirl

I've a congenital BAV, so my mother knows about it and she also knows that i will need surgery in future. I need to figure out a way to let her know that surgery date may be coming (perhaps sometime in 2016)

One more question:

Is it common to go from completely asymptomatic for 15 yrs to having symptoms in the span of 2 weeks? I've started feeling dizzy, chest tightness pretty much every day from last week, 10 days.