Confusing appointment today

[Lisa2]

I had my annual Echo on 11/10 and saw my doc today to get the results. I don't have my copy of the echo report yet but he told me my AVA is 1.0cm, my EF is 50%, and that my valve problems are moderate to severe. I asked him for a reasonable expectation of when I need to have surgery and he said he wasn't ready to rush into surgery. I know he doesn't have a crystal ball and can't predict how quickly my valve will change. I told him that I don't want to go into surgery with irreversible damage to my heart muscle. Then he says he is very comfortable referring me to a surgeon because of my AI and the fact that I need to eventually have the valve replaced. We talked about stress testing but he changed his mind on that. He took listened to my chest and told me that the leak is easily heard.

So the outcome of today's office visit is that I am being referred to UAB to consult with a surgeon and my follow-up appointments with my cardiologist have been moved up from one year to six month intervals. I'm also wearing a monitor for 24 hours to check for rhythm issues.

I feel very conflicted. If it's not quite time for surgery, why am I going to consult with a surgeon? I'm going anyway, just for peace of mind. It's a 5 hour drive so maybe I can turn it into a weekend trip.

 

[knotguilty]

I am surprised your doctor didn't order an echo or stress test. It is always better to have more information before going to see the surgeon. The surgeon will probably order more tests and then you will have to go back to him again. The ultimate test is the cardiac cath, which will tell him everything. It is a really hard waiting for things to progress and waiting too long when things can get worse. Thet know when they really shouldn't wait any longer, especially if you have symptoms. But good luck and hope you don't have to go through surgery yet.

 

[AZ Don]

I feel very conflicted. If it's not quite time for surgery, why am I going to consult with a surgeon? I'm going anyway, just for peace of mind. It's a 5 hour drive so maybe I can turn it into a weekend trip.

Besides peace of mind, second opinions can be useful and since it seems that surgery is inevitable and approaching it makes sense to get it from a surgeon.

 

[epstns]

Don't be surprised if you observe the old adage "Cardiologists want to watch and treat, surgeons want to operate." The surgeon may feel that it is, indeed, time for surgery. Listen to both, then make your own decision. There are a few statistical parameters that must be met (valve area, level of regurgitation, ventricular dimensions, etc.), and once they are met, surgery can be whenever you and your doctor choose.

 

[Paleowoman]

You don't want to wait till irreversible damage has been done. Here in the UK they tend to do surgery before any symptoms appear, but once they are approaching, as once symptoms appear damage can be done. This makes it's tricky when you are feeling fit and well to have to have surgery. I asked my GP why they wait till symptoms appear in America and he told me it was becuase of "litigation". That surprised me. He explained that once something is "done" , ie surgery, there's more chance of litigation, whereas in waiting that doesn't happen. If your surgeon says to do surgery then discuss with him how long you can wait, if you want to wait, and get a second opinion if you want.

 

[ottagal]

Lisa2,
You have been given some great advice. I think the second opinion is the way to go. I would also want to hear what the surgeon has to say before making any decisions. Wishing you the very best, I am sure this is a confusing time for you!

Paleogirl,
I was told by my cardiologist that they typically wait for symptoms to appear based on the benefit/risk ratio of surgery vs. no surgery. I.e. risks involved with surgery versus waiting. Once symptoms appear, the risks of waiting far trumps having surgery. He explained cases where they do not wait for symptoms i.e. bypass required at the same time, rapid echo changes etc. I would hate to think that decisions are only based on litigation and not sound medical reasons.
Just googled and this is what I found regarding the above:

NEJM -- Aug. 21, 2014 Clinical outcomes in adults with aortic stenosis are determined primarily by clinical symptoms, the severity of valve obstruction, and the left ventricular response to pressure overload. Assessment of patients and management decisions should take all three of these factors into account.6,7

The presence or absence of symptoms is the key element in decision making (Figure 4). There is robust evidence that aortic-valve replacement prolongs life in patients with symptomatic severe aortic stenosis, regardless of the type or severity of symptoms or the response to medical therapy.3,4,44,45However, accurate measures of the severity of stenosis are needed to ensure that valve obstruction — rather than concurrent coronary, pulmonary, or systemic disease or other conditions — is the cause of symptoms. In a patient with typical symptoms, a maximum transvalvular velocity of 4 m per second or greater, in conjunction with calcified immobile valve leaflets, confirms the diagnosis of severe aortic stenosis.6,28,30,46 With symptomatic, severe, high-gradient aortic stenosis, calculation of the valve area or indexed valve area does not improve the identification of patients who will benefit from valve replacement (Figure 5).47



Indications for Aortic-Valve Replacement (AVR).

In contrast, in asymptomatic patients with aortic stenosis and normal left ventricular systolic function, the usefulness of measures of severity is in identifying patients who will soon become symptomatic, thus indicating the need for frequent follow-up and consideration of elective intervention. Intervention is not needed until symptoms supervene, because the risk of sudden death is less than the risk of intervention, even when valve obstruction is severe.31,48 With very severe aortic stenosis, the rate of symptom onset is so high that elective valve replacement may be reasonable in selected cases.49–51

 

[Paleowoman]

Hi Ottagal - yes I know in America it's like that, I took the US indications for surgery list to my doctor as I thought they had done surgery on me too soon. According to the American list of indications I shouldn't have had surgery. But according to the UK protocol, surgery is always done, or supposed to be done, when the patient is actually symptomless but when they will have symtpoms very shortly - they try to catch the moment just before symptoms appear so that the risk of surgery is less than the risk of waiting. For example, many people on forum here have had the beginnings of left ventricular failure before they had their aortic valve replacement, which the UK docs would consider a risk. Consider Lisa's ejection fraction, it's 50% which is low (maybe that's why she was referred to a surgeon - you might want to check that Lisa), whereas mine was still very good at 78%. Post surgically my ejection fraction is 70% so not much different and still good. I'm not saying it's good having surgery when you don't have symptoms - I'm pretty unhappy about it as my health 10 months post surgery is not as good as the day before surgery as the effects of surgery itself weren't good for me, but still my heart is better than it was. Anyway, the threat of litigation thing was from a very knowledgable doctor I have (not my cardiologist and not my cardiac surgeron !) …and there is more litigation in America than in the UK so the docs there are very mindful of it. I would hope that's not correct but you have to wonder why people wait for symptoms in the US but not in the UK…. Still, getting back to Lisa, I would wonder if it's the Ejection Fraction that is of concern as a low one can indicate the beginnings of left ventricular failure….best ask the cardiologist or cardiac surgeon.

 

[Lisa2]

Yes, Paleogirl, the EF is the concern. I got my echo report today. My LV is normal in size, systolic function normal, and EF 50% as I stated above. Grade 1 diastolic dysfunction - I have to look that up. The aortic valve is moderately leaking with mildly calcified leaflets. The mitral and tricuspid valves have mild regurgitation with no stenosis. I knew about the mild tricuspid leak, although I thought it was classified as trace. I did not know my mitral was another leaky faucet. I don't know of that means anything in terms of my overall heart health but I will discuss it with my doc at my next visit.

 

[Protimenow]

In my case, I was told that I had a murmur and a bad valve when I was in my early 20s. I was told that I would probably need surgery 20 years later.

I began to feel arrhythmias and more fatigue about 20 years later, and at the time, I had a good job and good insurance. I asked the doctors one question: "how sick do I have to be before I need surgery?' Although, in some cases, they may not have recommended it at that time, I was ready.

I had the surgery, and less than a year later, I didn't have the job OR the medical benefits that would have paid for the surgery. I'm really glad that I had the surgery when I did. I don't know what would have happened if I had waited.

I realize that the system in UK is different. However, from my point of view, going in strong, with only a minimally weakened heart (yes, I NEEDED the surgery) is probably better than going in when you are really weak.

 

[dornole]

It sounds like you yourself tipped the scale to consult the surgeon by saying you don't want irreversible heart damage. He put you in the "most afraid of heart damage" vs. "most afraid of surgery" category, perhaps. I also think words like "rush" mean different things to doctors than patients. I still remember when they delivered my twins (while I was having congestive heart failure) and the perinatologist kept saying "this isn't an emergency." Sure looks like an emergency to me when you call people in who are off work and put me in an OR with 40 people and I hear f-bombs . . . : )

Anyhow, I hope you feel like you get clear direction from your surgical consult.

 

[Protimenow]

Well, not exactly. I DID ask my cardiologist about how bad off I had to be before surgery, but I wasn't ASKING for a surgical consult.

As it turned out in my case, my timing was good -- my insurance covered most of the costs.

I would have been just as satisfied with the answer from my cardiologist to wait a few years -- I still didn't need surgery yet.

 

[Lisa2]

True, I did state that I don't want irreversible heart damage - who does? I did not ask for a surgical consult. I talked with my cardiologist's nurse yesterday and it turns out this 2nd opinion is as much for my doctor as it is for me. Dornhole, I agree it sounds like you were indeed in an emergency state - something I don't want. I come from a BAV family, at least 4 of us with BAV and a cousin that had a heart attack at 36. I'm in a sticky spot because I'm almost 42 and going in at some point for my 2nd OHS. I have concerns that my aortic valve is affecting my mitral and tricuspid valves because they are both mildly regurgitant, whereas the tricuspid had a trace leak for years and there was no leak in the mitral valve.

Protimenow, you make a valid point. I don't know what I do without insurance. Luckily, insurance paid for almost all of my previous AVR. I paid a very limited amount out of pocket.

All is well with me. I have calmed down from initial hysteria :Face-Laugh:and I will consult with the surgeon on 12/09. I'm taking a dvd of my echo with me to the appointment and we will review and discuss it.

Thank you all for your support and concern.

 

[ottagal]

Lisa2,
Glad that the 'hysteria' is over... I can relate.

Good luck with your consult with the surgeon on the 9th. It never hurts to have another pair of eyes look at your findings.

BTW, did they ever do another test to confirm the echo results? I have had echos all over the place over the years and would definitely want a TEE or MRI to confirm the findings.

If this is of any help to you, my recent echo showed grade 2 diastolic dyfunction, and a mean gradient of 25 with my bioprosthetic aortic valve. Add into the mix a 4.1 cm aneurysm. There was no mention of moderate regurgitation such as you. However, the cardiologist felt comfortable seeing me in a year and didn't think I would need a re-do for quite some time (although he did say he didn't have a crystal ball). He didn't seem too worried.
I hope that this is the same for you and all goes well for you.

Paleogirl, Thanks for the information about the UK system. Amazing how we are all heart patients, but depending on what country we live in the Guidelines vary. I guess that is why they are called "guidelines".

 

[Arne]

I ended up seeing a surgeon 4-5 years ago to discuss my options. Then I saw two other surgeons 6 months ago to plan for my recent surgery. Don't be afraid to see a surgeon and discuss with him/her, they will be honest with you and tell you what to expect and help you with any questions you might have. Cardiologist don't usually have all the answers for surgery related questions. Plus, it's good to start thinking/planning for it so that it doesn't surprise you one day in an emergency situation.

 

[Bryan B]

Yes, Paleogirl, the EF is the concern. I got my echo report today. My LV is normal in size, systolic function normal, and EF 50% as I stated above. Grade 1 diastolic dysfunction - I have to look that up. The aortic valve is moderately leaking with mildly calcified leaflets. The mitral and tricuspid valves have mild regurgitation with no stenosis. I knew about the mild tricuspid leak, although I thought it was classified as trace. I did not know my mitral was another leaky faucet. I don't know of that means anything in terms of my overall heart health but I will discuss it with my doc at my next visit.

Lisa,

This is in response to your leaky mitral and tricuspid valves. I had mild leakage in both of mine before surgery as well, but after my aortic valve was replaced and functioning properly both valves went back to trace amounts of leakage. I think this phenomenon is not all that uncommon in patients with poorly functioning aortic valves.

 

[Lisa2]

Thanks, Bryan. I do hope the new aortic valve will resolve the leaks in the mitral and tricuspid valves, also. It's one of my questions for the surgeon. It seems reasonable that they will stop leaking once the other issues are fixed. Honestly, the more I read, the more I know that I need to speak with an expert

By the way, I hope you are doing well!