Surgery Timing?

[debster913]

Hi, all,

It's been a long time! I just wanted to pop in and ask if any of you have had valve replacement when you weren't symptomatic. My cardio wants to wait until I'm symptomatic again before pursuing surgery #2; I'd rather get it done while I'm still fit and healthy.

Any experiences/thoughts?

Thanks!
Debi (debster913)

 

[Eva]

I was told a long time ago when I was anxious to have my surgery when I was younger and fit: "it's better to avoid the knife as long as you have no symptoms and the echo numbers are still OK. Technology is continuously advancing, which could be to any patient's benefit."
Still, I wish I had mine a couple of years earlier, when my fatigue started increasing and I had to push myself to do anything!!

Six months before my surgery, I was out of breath most of the time even while sitting down.

 

[epstns]

Debi - I know just how you feel. In hindsight, I sort of wish I had done my surgery sooner - maybe I wouldn't have ended up with a pacemaker. . .

But, remember how the docs decide when to proceed. At the risk of being a bit crude, I'll paraphrase their thinking as "When the patient's odds of death are worse in waiting than in surgery, move to surgery." For most valve conditions (not aneurysms,etc.), the odds of an asymptomatic patient dying are very, very low. After symptoms present, the odds of death rise, so they are ready to operate.

 

[skeptic49]

Yes, Steve has it right: your odds of dying of valve disease have to be greater than the odds of dying from the surgery. Cheery thought, eh? My "numbers" are still not firmly in the severe range with an AVA of 1.1 cm2 and a mean gradient in the 30s but then I had a heart attack/stroke incident and that convinced all the docs that "it's time" as my surgeon put it. I doubt that you will be able to convince your medical team to do the surgery until symptoms present.

Jim

 

[cldlhd]

That's what I've heard also. My risk from surgery is probably greater than without it at this point.

 

[MurmurSinceForever]

I think my cardiologist stopped believing me after 5 years of being self-reportedly asymptomatic. When the echo showed severe stenosis and I still said I feel fine, he decided to do a exercise stress test, which I failed. He saw changes in the ECG indicating my heart was not getting enough oxygen. When he asked how I felt, I said normal, a little burning in my throat, but it will go away once I get warmed up. He stopped the treadmill right then and said - That's a symptom! It wasn't the classic: chest pain, shortness of breath, faininting and dizziness, so I didn't think it was a symptom. It was just my normal feeling when I exercised.


I had my surgery about 2 months later and I was still feeling pretty fine (although anxiety set in a bit) and recovery was reallly pretty easy. So I would say, if you want to get surgery when you are healthly, ask for a exercise stress test. Maybe you are having some minor symptoms that will convince the doctors it's time.

 

[Paleowoman]

Hi Debi - I didn't have any symptoms at all when I had aortic valve eplacement for my bicuspid aortic valve. I mean I really didn't have any symptoms, it wasn't my imagination. I have actually felt on a number of occasions that they were doing surgery too early as it has taken me a year to get back to the level of fitness I had prior to surgery. But in the UK - where I live - apparently they always try to do surgery just before you get symptoms, when you are just on the cusp of getting symptoms. I do think things a little different in the US where they appear to wait until a person has some symptoms.

At the time I was referred for surgery my aortic valve area was 0.9 (and I'm a small woman), my mean pressure gradient was 38, peak pressure gradient 68, and my ejection fraction 79%. I did a six mile walk the day before surgery and lifted weights - though not so heavy as I used to lift but only because I was told not to, I certainly felt strong enough. My ECG's have always been fine, both before and after surgery.

 

[soccer girl]

Hi - this is my first post. This timing of surgery is my current concern. I have a congenital bicuspid aortic valve and am also somewhat asymptomatic - meaning if I run over 10km then fatigue sets in ....I've been running two half-marathons a year for last 10 yrs or so. These symptoms appeared May/June 2014 - finally got an ECHO at end of October and got the bad news.....severe stenosis 0.74 cm2. I'm in the odd position that my gp and cardiologist orginally wanted my surgery yesterday - but it is my surgeon holding off because my mean pressure gradient is only 30 mm Hg with a peak at 64 - the surgeon would like to see it higher (40ish) before operating.

So I guess my question is to the experienced folks....what do you think of my numbers??

Right now I am totally banned from running which is understandable but frustrating - especially when I am not sure how long I will be waiting for things to get worse. I have a repeat ECHO next week afterwhich some decisions have to be made.

 

[Lisa2]

Hi, Debi. It's frustrating, isn't it? I had my annual appointment with my cardiologist this past Nov. and my doc referred me to a surgeon for a second opinion about timing. He thought we should we wait a bit so he made a referral for me to get the opinion straight from the one that will crack me open. The surgeon thinks the risk of doing surgery is greater than the risk of doing nothing at this point. The time is drawing near for me, but not quite yet. I, too, prefer to have the surgery before I get more sick. As it stands, I will see the surgeon again in May. He asked to see me in 3-6 months and we decided on 5 months because that will be 6 months from my last echo. I will have an echo and CT scan to check for aneurysms and then we'll reevaluate.

It's tough to have this thing looming over you! I like to have a plan and this waiting business is just darn inconvenient :-0

 

[Lisa2]

Hi, Soccer Girl, and welcome. I was banned from exercise before my first surgery because my AS was considered critical. I waited too long to have my surgery - my valve area was .5cm2. You ask for our thoughts on your numbers and in my non-expert opinion, it sounds like it probably time for you to start making some decisions.

 

[Northernlights]

Your measurements are peculiar, soccergirl! Your exercise capacity is very good, your symptoms are minimal if at all, your mean gradient is only moderate at 30, but a higher gradient would be expected given your severe small valve opening. Given the mismatch your surgeon is right to be cautious and do another echo just to check the accuracy of the measurements ( gradients are flow dependent: valve area is not, but is operator dependent ie. they can be inaccurate!). If there are still discrepancies a Trans-esophageal echo or exercise echo might be worth doing - and the latter might help clarify how safe running is, too.
From an editorial in Clinical Cardiology in 2004:
'From my perspective, there is too much reliance on the potentially inaccurate assessment of aortic valve area as a measure of aortic stenosis. Often I have seen aortic valve areas reported as less than 1 cm2 with an aortic valve gradient of 25 and an LV ejection fraction of 60%. I can understand aortic valve area less than 1 cm2 if the ejection fraction is quite low, but not when it is normal. When this occurs, one must question the calculation of the aortic valve area, and do everything possible to refine the measurements'.
The above may be similar to your surgeon's thinking. I hope the repeat echo clarifies things one way or the other.

 

[big_L]

I was absolutely sure I was asymptomatic before surgery. Now, 17 months later, I can assure you that I was not. I am not getting short of breath, before I just thought it was a normal result of exertion. Of course, it is, but not at the low levels of exercise.

 

[soccer girl]

Thanks Northern Lights and bit_L

I suspect once this is surgery is done that I too will find that I actually was much more symptomatic than I thought and that it just snuck up on me so gradually that I just chalked up everything to getting old (even though I am only 52). I doubt the valve area measurement is too far wrong - my last ECHO was 5 yrs ago and was 1.0 cm2 (of course nobody thought to tell me I was getting into trouble at the time - which is why it was 5 yrs for next ECHO.....sigh - but that is another story).

My worry is whom to trust - surgeon or cardiologist - about when. Kinda feel I have to go with the surgeon's since he is doing it but it is causing me some anxiety obviously. Just don't want to "drop dead" so to say or to do more damage to the rest of my heart waiting.....

After spending Nov and Dec stressing about which valve - I finally decided on mechanical - ended up I just want to get past this - get to my new normal (with warfarin) and not worry about having to go through this all over again....it is a hard place to be even this first time. Thus because I am opting for mechanical I can't really see the point of waiting - since the plan is to have it last forever - no matter when I get it.

Does anyone have a comment on the risks of not treating asymptomatic cases severe stenosis with low gradient but intact LV function ?
All my other numbers are good ...

In the meantime - I agree that if the ECHO changes nothing and I have to wait another 3-6 months til the next - I think I will ask for some sort of stress test to see whether I can get back to some sort of excersize in the meantime (excersize helps with stress/anxiety).

thanks again

 

[carolinemc]

soccer girl, if they agree to ahead to perform the surgery, go for it. And the surgeon will perform and the Cardio will keep the surgeon appraised of your condition. They will not wait too long that there would be problems during surgery, it will be before that. Just try to relax, people go through the waiting all the time. And on the exercise, they could recommend walking at a slow pace to keep the stress off the heart and the valve. Good luck and do not rush the surgery time. It will happen when the good Lord deems the time has come for it. And do reading and handicrafts also to keep your mind busy. Hugs for today.

 

[river-wear]

I was pretty convinced I was symptomatic before surgery, but seven months post-op I can definitively say I was not. (I'm truly not a morning person and simply need more sleep.) I never had shortness of breath or any of the "classic" symptoms. My EF was borderline pre-op. Nothing much to see but a huge leak beforehand. Happily I feel good as new now.

Good luck sorting things out Debi! Are there any signs your repair is failing?

 

[dornole]

Well Deb, for the mitral valve condition I have anyway, they will definitely intervene when asymptomatic if I pass certain trigger points on the echo, because they know how it progresses from there and it is not good. Symptomatic patients have a different flow chart. It was really informative for me to look at some of these, especially compared to AVR ones (for example, the use of ejection fraction is radically different for MVR vs. AVR). It seems to REALLY depend on the exact valve AND condition of the valve (stenosis, regurgitation, both) as to whether they will operate on asymptomatic patients.

For me, I trust my cardiologist to follow his flow chart for the echo results to decide when it is go time. I use a heart rate monitor to objectively track my fitness levels doing prescribed workouts over time so I can objectively report if I am losing aerobic fitness in even a subtle way, that way I'm giving the best info I can on the "symptomatic" part. If I'm asymptomatic and doc thinks numbers are still ok, yeah I'll put off surgery. : ) If I'm asymptomatic and he says GO . . . or I become symptomatic and he says NO . . . I'll get a second opinion. I'm prepared to get surgery without symptoms, but I'm not going to proactively ask them to Cut Me Now either. There's for sure risks to surgery and as others have said, they can develop better techniques, or I could be one of the lucky ones who gets a really nice long run between procedures.

 

[debster913]

Hi, all,
Thanks for your replies! I did have a stress echo on Jan. 10 and did well on the test though by the end of the 12 minutes of "walking uphill" really, really fast, I felt really tired. I started running (again) last October after a bad accident in July 2013, so even being able to run 3 1/2 miles at this point is pretty awesome. Nevertheless, I also have asthma (was diagnosed in 2012) which my cardio disagrees with, even though my pulmonologist is the one he referred me to (and a good friend of his). I get shortness of breath and all cough-y when I run so I've mostly chalked it up to the asthma.

I see my cardio next week for a follow-up. He expressed concerns last summer (2014) after my yearly echo. I might have a blown chord and I have moderate regurgitation. When my cardio did the stress echo this last month, he noticed the same, but I know he likes to take a closer look and assess further before his final report. Long story short: I will need valve surgery again. He says not now, maybe in another 10 years (but he said that 10 years ago and I needed surgery a year later) because I'm not symptomatic. I will be having another heart cath soon so he can take measurements. He also doesn't like all my PVCs and wants to consult with my electrophysiologist.

 

[Nupur]

Hi Debi, I am sorry that you are considering surgery. Is the repair not holding? I have lots of symptoms like palpitations, low exercise tolerance (can't walk uphill, flat ground is fine), I'd rather get mine repaired sooner than later but i've been told it's not time yet. I think they really don't want you to have surgery unless there is a serious risk if you don't. In your case, will this be a replacement and if so, what kind of valve are you choosing? I ask because this impacts how many future surgeries you might need.

How are the PVC's?