Severe Aortic Regurgitation Leading to Second Surgery

[skier]

Howdy, folks. Thanks for this great forum!

I've been a lurker here since my first surgery in 2017 to repair an ascending aortic aneurysm and resection of a myxoma. While in there, my BAV was also repaired.

Four years later, I now have severe aortic regurgitation. It's gone from mild to moderate to severe in the last three years, and I have a moderately dilated left ventricle.

I'm asymptomatic and feeling great. My EF is 69.6, and I did 19 METS on a nuclear stress test. I'm a 55yr old wannabe athlete and was training for a sprint triathlon this summer when my echo raised concerns. I've had the nuclear stress test and a cardiac MRI since.

Next up are a cardiac CT and a transesophageal echo to correlate and corroborate the MRI before meeting with my surgeon.

In the meantime, I have severe activity restrictions, which sucks. HR below 120, no skiing, and no weights. I'm hopeful my surgeon will loosen those restrictions if I'm not due for immediate surgery. They are quite counter to my preferred lifestyle.

It seems I'm going to have another surgery, and the question is when. My two outstanding cardiologists (primary and sports) defer to my surgeon on the timing. I'm fortunate to be cared for at a major university and have confidence in my team.

So, based on these guidelines, it seems like I may be in the waiting room until I develop symptoms or my left ventricle gets bigger?
https://www.ahajournals.org/doi/epub/10.1161/CIR.0000000000000031
Am I reading those guidelines correctly? I've done a bit of searching here, but wondering if there are any other experiences with asymptomatic severe aortic regurgitation? I want to have all the knowledge I can before meeting with my surgeon. Thanks!

 

[vitdoc]

Guidelines are guidelines. Not written in stone to be followed blindly for each individual. If you were not progressing or you were 99 years old than waiting makes sense. But you are progressing - mild to severe aortic regurgitation.
Ask you physicians what is the likelihood you will not need surgery? The answer will be very very likely you will. So if you are being told to avoid many activities now, why wait? Get another opinion somewhere that is doing many valve surgeries. If they agree to wait so be it. But if not, go for it while your heart hasn’t decompensated too much. Good luck.

 

[skier]

Ask you physicians what is the likelihood you will not need surgery? The answer will be very very likely you will. So if you are being told to avoid many activities now, why wait?

Thanks, your questions are spot on! Yes, it looks like surgery is inevitable.

I won't wait if I need to live with the current activity restrictions—too much impact on my quality of life.

That said, I'm hopeful when I meet with my surgeon, he may allow me to do more after the additional tests. My sports cardiologist gave me the restrictions while waiting to see my surgeon, who will provide definitive recommendations.

Why wait? Even if it's just for a year or two, I'd prefer to wait for a few reasons:

• Additional time with my family if something goes wrong during surgery. We've got a couple of kiddos I'd love the extra time with.
• Time to switch to a job that will allow me to buy more life insurance and get long-term disability insurance that I currently don't have. I'm doing contract work and don't have great benefits as a result.
• There are other financial aspects where my family will likely be better off if the surgery goes badly in a couple of years vs. now.

I'll go ahead with the surgery right away if there is a risk of a bad event without getting it fixed or possible irreversible damage from waiting.

I'd love to hear additional thoughts or experiences to help clarify or correct my thinking.

 

[Superman]

That’s pretty much it, skier. You do the surgery when the risk of not doing it outweighs the risk of doing it. For that, you count on your cardiologist and surgeon to give you the best guidance they can. And if you don’t trust them, find new ones.

Keep us posted as things develop. For now, enjoy your holidays and family surgery free!

 

[dick0236]

Four years later, I now have severe aortic regurgitation. It's gone from mild to moderate to severe in the last three years, and I have a moderately dilated left ventricle...........

........I'm asymptomatic and feeling great........

Like Vitdoc said.....guidelines are only guidelines. Your post points out "severe aortic regurgitation" that has gone from "mild to moderate to severe in three years". I had known of my "bad heart murmur" for many years but that was before Open Heart Surgery and not much could be done. Fortunately, I was asymptomatic until I was about to graduate from college when I had some symptoms that caused me to visit a surgeon at the University. After a few tests (that would be considered "primitive" by today's standards) they wanted me to have surgery ASAP. I put them off until I graduated a few months later.......but the surgeon gave me a warning about waiting. He told me that I had "a one in four chance of dropping dead with no warning". Obviously, it worked out OK for me but I do believe it is better to be a little to early than a little to late for this kind of procedure.

I just saw your follow-up post. I was a father of two young boys.......was a student with no "real" job....had no life or disability insurance or savings.............and I was very lucky that all worked out OK. Your reasoning for delay is admirable.......but the risk of a bad event as a result of corrective surgery is minimal and the risk of waiting too long could be worse.

 

[pellicle]

I'd love to hear additional thoughts or experiences to help clarify or correct my thinking.

seems pretty straight up and down to me ...

Best Wishes

 

[Croooser]

That’s pretty much it, skier. You do the surgery when the risk of not doing it outweighs the risk of doing it. For that, you count on your cardiologist and surgeon to give you the best guidance they can. And if you don’t trust them, find new ones.

+1 This is the only criteria that counts. You will have plenty of challenges and decisions the rest of your life. The best way to prepare for them is to have your surgery at the optimum time for your heart, not the optimum time for any other issues.

 

[Deepak khanka]

Hi Skier
What is your LV size?
If you do the surgery in time LV reversal is possible or else when done in symptomatic state reversal might get difficult
Spk to our cardiologist and enquire if you need to take any beta blocker and bp tablets . They help to keep the LV in control. I am sailing in the boat and I am on the waiting list to have my second surgery
After a David’s procedure which wasn’t a success

 

[skier]

What is your LV size?

That's what I want to know! An echo said it was normal, but MRI said moderately dilated.

Echo in July:
Left Ventricle:
The left ventricle is normal in thickness. The left ventricle is normal
in size. Calculated biplane EF is 64.3 %. Left ventricular function is within normal
limits.
The LVIDd is 5.7 cm and unchanged from prior study.
MMode/2D Measurements & Calculations
IVSd: 0.94 cm LVIDd: 5.7 cm FS: 29.0 % RVDd base: 4.7 cm
LVPWd: 1.0 cm LVIDs: 4.0 cm RVDd Mid: 3.6 cm

MRI in September:
Normal LV systolic function at 69.6% with dilated LV cavity (EDV is 249 mL).
LV functional parameters:
LVEF, 69.6%.
LV end-diastolic volume, 249 mL; ; normalized for BSA: 124 mL.
LV end-systolic volume: 76 mL; normalized for BSA: 38 mL.
Stroke volume, 173 mL; normalized for BSA: 86 mL.
Cardiac output, 8.3L/min
Cardiac index, 4.1L/min/meter2

My cardiologist said the LV EDV 249 mL indicates moderately dilated.

I have a TEE next week and Cardiac CT in a month (soonest available) to confirm.

 

[Chuck C]

Hi Skier and welcome to the forum!

I was diagnosed with BAV and aortic stenosis at age 52 in July 2019. Whenever I had my cardiology consultations or surgeon consultations, I always told them that I would rather get my surgery 6 months too early than 6 months too late.

After staying near the moderate/severe line for 18 months, in February of this year I crossed the line into severe aortic stenosis although I was asymptomatic. My cardiologist told me that it was my decision whether to get surgery now or wait for symptoms. The guidelines currently call for waiting for symptoms with AS patients, even if you are severe. However, there is growing evidence that outcomes are better if surgery occurs prior to the onset of symptoms. This is true for both aortic stenosis and aortic regurgitation. By the time one is symptomatic, the left ventricle has typically made significant structural adaptions to comensate for the declining amount of blood it is able to get to the body. These structural changes can reach a point where they are not reversible, or only partially reversible and this tends to lead to worse long term outcomes.

When I crosse the line into severe stenosis, sought input from the following in terms of the right course of action; get surgery now or wait for symptoms:

-Consulted with my cardiologist. His feedback was to really emphasize that the decision was mine. We had a good dialogue about the pros and cons of waiting and the 2020 meta-analysis which found significantly better outcomes for AS patients if surgery occurred prior to the onset of symptoms.

-Consulted with my surgeon: He was strongly of the opinion to get the surgery now and not wait. He pointed out that my first symptom could easily be sudden death. BTW, there are some surgeons who are eager to operate and I had consulted with one of those in 2019 who wanted to get me under the knife immediately, despite the fact that at the time I was asymptomatic and moderate AS. Dr. Shemin had proven that he was not one of those overly eager surgeons. In my first consult with him, when I was moderate/severe in October 2020, his advice was to watch and wait. So, he had earned my trust.

-I sought the feedback from members of this community. I put heavy weight on the consult of experts, but I also deeply value the views people who have walked the walk and faced the choices that I now faced on a personal level. Overwhelmingly other members encouraged me to get it sooner, rather than wait for symptoms, which could mean irreversible structural damage to my heart and the healthier that I go into the surgery, the better my recovery will be.

Here is a link to my post when I sought feedback from the community on what they would do if they were in my shoes. I also documented my recovery later in the thread.

https://www.valvereplacement.org/th...to-severe-and-need-to-make-a-decision.887879/
-I sought the input from my family- In particular, my father and my wife are wise in their analysis of such matters.

Having taken input from all of the above, at the end of the day, the decision was mine to make. I was told that I would almost certainly start getting symptoms within a year and probably within months. I could see nothing to be gained from waiting a few months and potentially a lot to lose; irreversible structural damage to my heart or even death.

Guidelines are great as they are guided by the evidence. However, in that the guidelines are not reviewed and updated often, there can often be a lag from the evidence making its way into the guidelines. As it turns out, with both aortic stenosis and aortic regurgitation, there is mounting evidence for better outcomes if surgical intervention occurs prior to the onset of symptoms.

Please take a look at this 2019 study published in the Journal of American College of Cardiology (JACC).

Outcomes in Chronic Hemodynamically Significant Aortic Regurgitation and Limitations of Current Guidelines

https://www.jacc.org/doi/10.1016/j.jacc.2019.01.024

“Class I indications for surgery, mainly symptoms, are the most common triggers for AVR. Class II indications were associated with better post-operative outcome and thus merit more attention.”

It should be noted that many of the Class II subcategories involve asymptomatic patients.

It is generally of particular concern when disease is progressing rapidly. Given the information that you have presented in terms of how quickly you progressed from mild to severe, it is possible, perhaps likely, that your situation might be classified as rapid progression and something which you should discuss with your surgeon.

Best of luck in the big decisions that are before you and please keep us posted. Feel free to reach out with any questions that you might have.

 

[skier]

Happy New Year (a bit late)! I've been ignoring cardiac things until I finished my last test today.

Thanks so much for the thoughtful responses. @Chuck C, I really appreciate your similar experience and that on-point paper I hadn't seen. Thanks!

Good news from my tests, I think. At least better than I expected.

CT Coronary
1. No coronary artery plaque or stenosis.
2. Calcium score of 0; placing this patient at the 0th percentile for age, gender and ethnicity.
3. Normal left ventricular wall motion with preserved ejection fraction.
4. Cardiac chambers: Normal sized cardiac chambers. No evidence of LVH
--------------------------------------------------------------------------------------------------------

Echocardiogram: Transesophageal (TEE)
Mildly dilated left ventricle with normal systolic function, 3D LVEF 67%.

Normal right ventricular size and systolic function.

Moderate-to-severe aortic regurgitation across the entire coaptation plane of the bicuspid
aortic valve and culminates in an eccentric jet towards the anterior leaflet of the mitral
valve. Eccentric nature of AR jet limits accuracy of pressure half time and several
quantitative metrics. Likely diastolic flow reversal in the descending thoracic aorta
although alignment was difficult.

Otherwise normal valvular structures and function

Unable to estimate pulmonary artery systolic pressure due to insufficient tricuspid
regurgitation.

No pericardial effusion.

Ascending aortic graft limits assessment of proximal ascending aorta. Aortic root measures
3.7cm at the level of the sinus of Valsalva.

No significant change noted in comparison to transthoracic study dated 7/27/2021.
--------------------------------------------------------------------------------------------------------

I'm meeting with my cardiologist tomorrow to discuss. No appointment scheduled with my surgeon yet.

I'm guessing that I'm not yet a candidate for surgery yet, based on moderate-to-severe aortic regurgitation, normal left ventricle size, and no progression over five months. Does anyone see it differently?

We'll see about ongoing activity restrictions. No skiing is rough for me. It's been snowing here a bunch.

 

[pellicle]

I'm meeting with my cardiologist tomorrow to discuss. No appointment scheduled with my surgeon yet.

Hang in there, the waiting room can be tough.

its a bit like when I was doing my second degree, I felt "ripped off" that on beautiful sunny days I could not go out sailing or on bike rides with my mates because I had assessment due, and or studying for exams. I had 3 years of that.

Of course those 3 and a half years passed and in the following decades I forgot about it. The same will come for you.

This is why we are called "a patient"

Best Wishes

 

[Chuck C]

I'm guessing that I'm not yet a candidate for surgery yet, based on moderate-to-severe aortic regurgitation, normal left ventricle size, and no progression over five months. Does anyone see it differently?

Hi Skier.

Since you are asymptomatic and your regurgitation is moderate to severe, I doubt that your cardiologist will recommend surgery. It does sound like the day is coming however.

We'll see about ongoing activity restrictions. No skiing is rough for me.

Yeah, that is a real bummer. I'd really press him on why no skiing. Obviously, you don't want to risk anything serious. For what it's worth, my carediologist was not crazy about me boxing when I was in the moderate category of aortic stenosis. I knew that there was some risk, but the risk was truly very low and I knew I would likely need to give it up once I became severe, so I went for it. But, we all need to decide what things give us enjoyment and how much risk we are willing to take on for those activities.

 

[pellicle]

oh, @skier I edited that and was about to add a PS

right now I'd fukken love to have been back in Finland and skiing again. I miss it a lot. But you know, COVID...

 

[Deepak khanka]

Happy New Year (a bit late)! I've been ignoring cardiac things until I finished my last test today.

Thanks so much for the thoughtful responses. @Chuck C, I really appreciate your similar experience and that on-point paper I hadn't seen. Thanks!

Good news from my tests, I think. At least better than I expected.

CT Coronary
1. No coronary artery plaque or stenosis.
2. Calcium score of 0; placing this patient at the 0th percentile for age, gender and ethnicity.
3. Normal left ventricular wall motion with preserved ejection fraction.
4. Cardiac chambers: Normal sized cardiac chambers. No evidence of LVH
--------------------------------------------------------------------------------------------------------

Echocardiogram: Transesophageal (TEE)
Mildly dilated left ventricle with normal systolic function, 3D LVEF 67%.

Normal right ventricular size and systolic function.

Moderate-to-severe aortic regurgitation across the entire coaptation plane of the bicuspid
aortic valve and culminates in an eccentric jet towards the anterior leaflet of the mitral
valve. Eccentric nature of AR jet limits accuracy of pressure half time and several
quantitative metrics. Likely diastolic flow reversal in the descending thoracic aorta
although alignment was difficult.

Otherwise normal valvular structures and function

Unable to estimate pulmonary artery systolic pressure due to insufficient tricuspid
regurgitation.

No pericardial effusion.

Ascending aortic graft limits assessment of proximal ascending aorta. Aortic root measures
3.7cm at the level of the sinus of Valsalva.

No significant change noted in comparison to transthoracic study dated 7/27/2021.
--------------------------------------------------------------------------------------------------------

I'm meeting with my cardiologist tomorrow to discuss. No appointment scheduled with my surgeon yet.

I'm guessing that I'm not yet a candidate for surgery yet, based on moderate-to-severe aortic regurgitation, normal left ventricle size, and no progression over five months. Does anyone see it differently?

We'll see about ongoing activity restrictions. No skiing is rough for me. It's been snowing here a bunch.

Wondering what are the normal range for aortic root ? Your is 3.7 . Did you speak to your cardiologist about this ?

 

[carolinemc]

Happy New Year (a bit late)! I've been ignoring cardiac things until I finished my last test today.

Thanks so much for the thoughtful responses. @Chuck C, I really appreciate your similar experience and that on-point paper I hadn't seen. Thanks!

Good news from my tests, I think. At least better than I expected.

CT Coronary
1. No coronary artery plaque or stenosis.
2. Calcium score of 0; placing this patient at the 0th percentile for age, gender and ethnicity.
3. Normal left ventricular wall motion with preserved ejection fraction.
4. Cardiac chambers: Normal sized cardiac chambers. No evidence of LVH
--------------------------------------------------------------------------------------------------------

Echocardiogram: Transesophageal (TEE)
Mildly dilated left ventricle with normal systolic function, 3D LVEF 67%.

Normal right ventricular size and systolic function.

Moderate-to-severe aortic regurgitation across the entire coaptation plane of the bicuspid
aortic valve and culminates in an eccentric jet towards the anterior leaflet of the mitral
valve. Eccentric nature of AR jet limits accuracy of pressure half time and several
quantitative metrics. Likely diastolic flow reversal in the descending thoracic aorta
although alignment was difficult.

Otherwise normal valvular structures and function

Unable to estimate pulmonary artery systolic pressure due to insufficient tricuspid
regurgitation.

No pericardial effusion.

Ascending aortic graft limits assessment of proximal ascending aorta. Aortic root measures
3.7cm at the level of the sinus of Valsalva.

No significant change noted in comparison to transthoracic study dated 7/27/2021.
--------------------------------------------------------------------------------------------------------

I'm meeting with my cardiologist tomorrow to discuss. No appointment scheduled with my surgeon yet.

I'm guessing that I'm not yet a candidate for surgery yet, based on moderate-to-severe aortic regurgitation, normal left ventricle size, and no progression over five months. Does anyone see it differently?

We'll see about ongoing activity restrictions. No skiing is rough for me. It's been snowing here a bunch.

You will just have to sit tight. Restrictions are meant right now to save problems. At least till they decide the final outcome. At least you can do other things to make lie interesting. It will depend on any changes in the valves. Hope you luck that it can wait, but do not be disappointed if you need surgery soon and not later. Good luck on the outcome with the cardio.

 

[skier]

After seeing my cardiologist yesterday, it looks like I may not be waiting too long. I now have an appointment with my surgeon Friday. Oh boy, that happened fast!

My cardiologist didn't want to give an opinion, leaving the "when and what surgery" up to the surgeon. She did say they had conferred and wanted me to return to my active lifestyle, attributing that to my otherwise excellent heart health. She was super happy with my zero calcium score along with 19 METS on my stress test. She said that, along with my good overall health, makes me "an excellent candidate for surgery."

So, my excitement over my recent TEE and Cardiac CT test results was unfounded. She said the definitive test for AR and LV size was the Cardiac MRI that showed severe regurgitation and moderate left ventricle dilation. My surgeon wanted the TEE and Cardiac CT as standard pre-op screening. The regurgitation and LV size are more accurate than an MRI because it's in three dimensions rather than two.

So, severe AR and moderate LV dilation it is.

 

[pellicle]

After seeing my cardiologist yesterday, it looks like I may not be waiting too long. I now have an appointment with my surgeon Friday. Oh boy, that happened fast!

that's actually good. Upfront your age is not in your Bio and your age makes a big difference in the clarity of decision choices.

Now my advice goes like this:

• take a deep breath and not worry too much about any details, knowing this whole interplay of stuff is what they do, not what you do
• take time to objectively look at the choices that are before you and inform yourself in a plain and simple way, you now have two choices:
  1. bio-prostheses
  2. mechanical prostheses
• your job now is to evaluate these two choices and to consider your age group, your personality type and then read posts here and consider things in a critical thinking manner. I also like this guide as it also represents what we teach at my university (not that one)
• weed out what is fluff and what at is evidence based substantiate-able fact

Soon all this will be in your rear view mirror, and not only will the year pass, in all likelihood tens of years will pass. My second surgery was in 1992 (so yes twenty nine years ago) and what happened then is more or less a dim memory. So this too will become that for you eventually. The questions that should be on your mind are:

• do I want this to become a serial event or not?
• can I be a little bit organised and take a hand in managing my own health?

I phrase those questions in the certainty of bio-prosthetic SVD driving replacement (depending on your age, which I don't know) and the other certainty of needing to manage your INR. One is out of your hands and the other is "the ball is in your court".

That at its nub is the choice that the patient must understand and decide upon.

Best Wishes

 

[Chuck C]

After seeing my cardiologist yesterday, it looks like I may not be waiting too long.

In some ways, once you know that surgery is inevitable, it is better to just get it over with and start on the path to recovery. With your good health and fitness level, you should do very well in surgery and recovery.

Please keep us posted on what your surgeon recommends.

 

[skier]

Yeah, that is a real bummer. I'd really press him on why no skiing. Obviously, you don't want to risk anything serious

I did press a bit on why no skiing when I met with my sports cardiologist last month to discuss the results of my MRI. He's the doc who gave me my current activity restrictions pending meeting with my surgeon. It's probably worth sharing the discussion as it may be helpful for others considering skiing with heart issues.

I asked why he didn't want me skiing, even easily with my kids. It's an issue of altitude and access to care. He doesn't want me to do any exercise at altitude, and if I had a cardiac event while skiing, it would take some time for ski patrol to get to me. Then transport to a hospital would take a very long time. If I were skiing alone, as I often do on uncrowded expert runs, I wouldn't have much chance unless someone happened to find me quickly.

When I asked if he's concerned about me doing damage to my heart or sudden cardiac death, he said "both." That got my attention. The structural issues with my heart combined with exercise at altitude are a bad combination that can lead to arrhythmias. He did leave it up to my surgeon to adjust my activity restrictions, particularly if I don't have surgery.

That sure makes a good argument for having surgery sooner than later. I don't think I'll be comfortable skiing knowing the risks, especially aggressively. My sports cardiologist was given pause when I showed him this graph of my heart rate vs. altitude while skiing hard:

I'm fortunate to have a doc who knows this stuff, as he's the primary author of this article about exercise at altitude for folks with heart issues:
https://www.ahajournals.org/doi/10.1161/JAHA.121.023225