Symptoms, but Dr says not yet????/ Thoughts??

[PeteCrev]

I currently have symptoms:
Headaches
Dizziness
Shortness of Breath
Ankle aches
But the dr says he would rather me wait for surgery, because I might need surgery again? Possibly 10 years from now. Any thoughts of why I should wait??? Who's decision is it Docs, Surgeons, or Mine????

 

[dick0236]

But the dr says he would rather me wait for surgery, because I might need surgery again? Possibly 10 years from now. Any thoughts of why I should wait??? Who's decision is it Docs, Surgeons, or Mine????

Ultimately it is your decision.....but it is a surgery that should not be done until medically necessary. If you are uncomfortable with waiting, you may want to get a second opinion from a different cardio and/or surgeon.

 

[tom in MO]

The Mayo clinic symptoms for aortic valve stenosis are:
Chest pain (angina) or tightness
Feeling faint or fainting with exertion
Shortness of breath, especially with exertion
Fatigue, especially during times of increased activity
Heart palpitations — sensations of a rapid, fluttering heartbeat

Your only symptom of stenosis is shortness of breath.

You don't wait for valve replacement surgery "because you might need it again." That answer from your doctor is confusing.

I'd suggest you have a communication difficulty with your doctor. Maybe you should speak to him again with more detailed questions.

Usually it is a cardiologist who refers you to a surgeon, they both tell you when they think it's needed, you decide when.

 

[PeteCrev]

The Mayo clinic symptoms for aortic valve stenosis are:
Chest pain (angina) or tightness
Feeling faint or fainting with exertion
Shortness of breath, especially with exertion
Fatigue, especially during times of increased activity
Heart palpitations — sensations of a rapid, fluttering heartbeat

Your only symptom of stenosis is shortness of breath.

You don't wait for valve replacement surgery "because you might need it again." That answer from your doctor is confusing.

I'd suggest you have a communication difficulty with your doctor. Maybe you should speak to him again with more detailed questions.

Usually it is a cardiologist who refers you to a surgeon, they both tell you when they think it's needed, you decide when.

Sorry...I do have tightness at times, fatigue and palpitations at times. He did refer me to a few surgeons, just called me after I had my echo yesterday for the surgeons that I really wasn't that bad yet. Meaning I guess I should wait until I really need it.....I'm guessing because I would need the surgery later on in life.
The question is I don't feel comfortable know that I have this problem and feel like a ticking time bomb and just want to get it fixed ASAP? Thoughts??

 

[tom in MO]

With me the progression was measured by echos. First I had the echo every 5-10 years, then every year and then every 6 months. It was clear that it was time, I did not have any noticable symptoms though.

If you were recommended to see a surgeon by your cardio, do so, they will give you a second opinion. My cardio thought I needed the surgery soon (~3month) when my echo looked bad, the surgeon said 6 month. I did it as soon as possible, within 2 months. After surgery, my surgeon said the valve was in bad shape and would have needed replacement soon. They can't really be super exact with echos etc.

 

[PeteCrev]

With me the progression was measured by echos. First I had the echo every 5-10 years, then every year and then every 6 months. It was clear that it was time, I did not have any noticable symptoms though.

If you were recommended to see a surgeon by your cardio, do so, they will give you a second opinion. My cardio thought I needed the surgery soon (~3month) when my echo looked bad, the surgeon said 6 month. I did it as soon as possible, within 2 months. After surgery, my surgeon said the valve was in bad shape and would have needed replacement soon. They can't really be super exact with echos etc.

I only found out about this 1 1/2 years ago and it went from 1yr to 6mo to every 3 months now.

 

[PeteCrev]

Ultimately it is your decision.....but it is a surgery that should not be done until medically necessary. If you are uncomfortable with waiting, you may want to get a second opinion from a different cardio and/or surgeon.

Thank you....my second and third opinion will be the surgeons i have appointments with next week, and will take it from there.

 

[big_L]

Can you get your echo report and see what your valve area and gradient results are? This is the criteria used, along with symptoms, to decide that it's time for surgery. Once the stenosis is deemed severe or critical and you're symptomatic, it's time for surgery.

There's a classic 'mortality curve' that all the cardiologists learned in school for stenosis patients (sorry - I can't find a better image). The unknown is where are you on this curve. This is usually more of an issue with the asymptomatic, stenosis patient. Once you're symptomatic, it's usually time for surgery, due to the risk of sudden death or irreversible cardiac changes.

Maybe your symptoms are not valve related?

 

[PeteCrev]

Can you get your echo report and see what your valve area and gradient results are? This is the criteria used, along with symptoms, to decide that it's time for surgery. Once the stenosis is deemed severe or critical and you're symptomatic, it's time for surgery.

There's a classic 'mortality curve' that all the cardiologists learned in school for stenosis patients (sorry - I can't find a better image). The unknown is where are you on this curve. This is usually more of an issue with the asymptomatic, stenosis patient. Once you're symptomatic, it's usually time for surgery, due to the risk of sudden death or irreversible cardiac changes.

Maybe your symptoms are not valve related?

My lastest Echo from last week says that I am @ 1.0cm2 which the doctor tells me is borderline severe. Now....being symptomatic i'm sure is a little of a mind game, but I do have symptoms:
Headaches
Dizziness everyday
Heart palpitations
Shortness of breath during exertions
Ankle aches
Fatigue
Chest pain / tightness when I over do it.

 

[epstns]

Pete - I don't really understand the doctor's recommendation to wait "because you will probably need surgery again." At your age, I would bet that they will recommend a mechanical valve, which would most likely last the rest of your natural life (the same life expectancy you would have if you had never needed valve surgery). If you did get a mechanical valve, what would the next surgery be for?

On the other hand, if you opted for a tissue valve you would most likely need at least one more valve replacement, if not more. Most of the major heart centers are now recommending tissue valves for patients around the age of 55-60 and older, but if you are already at 1.0 cm2, I don't think you can wait that long. So, you will probably get a mechanical valve, which should have a very long service life. So, why wait? I don't expect you to have these answers. I am just posing the questions so that you can ask your cardio. Maybe he has reasons that have not been stated - and you need to understand what he is thinking before you can make your own decisions.

 

[PeteCrev]

Pete - I don't really understand the doctor's recommendation to wait "because you will probably need surgery again." At your age, I would bet that they will recommend a mechanical valve, which would most likely last the rest of your natural life (the same life expectancy you would have if you had never needed valve surgery). If you did get a mechanical valve, what would the next surgery be for?

On the other hand, if you opted for a tissue valve you would most likely need at least one more valve replacement, if not more. Most of the major heart centers are now recommending tissue valves for patients around the age of 55-60 and older, but if you are already at 1.0 cm2, I don't think you can wait that long. So, you will probably get a mechanical valve, which should have a very long service life. So, why wait? I don't expect you to have these answers. I am just posing the questions so that you can ask your cardio. Maybe he has reasons that have not been stated - and you need to understand what he is thinking before you can make your own decisions.

Steve-
I think I am leaning towards the mechanical valve....Thats a good question, why would the cardio say wait? I dont know! Soo new to this and thats why these chats are so important. Let me ask you this....I am meeting with 2 surgeons this week....being your so knowledgeable about this....what questions do you think I should ask?

 

[AgilityDog]

I'd worry about the risks of waiting too long before surgery.

I have LOTS of damage from being undiagnosed for 4-5 months before my MVR. That's why I needed the Maze procedure, and now have a pacemaker and arrhythmias, That's why I had to have the aortic valve done, that's why I had my tricuspid repaired (because of all the wires from the pacer/defib, which I may not have needed if my internist had paid attention in early JUNE, after my mitral valve ripped in April, instead of going undiagnosed until late AUGUST.

 

[clay_from_nj]

Hear, hear, Laurie! Another patient here who should have gone for surgery much sooner than did. Because of this, I have an uphill battle against CHF, low EF, and hypertrophic cardiomyopathy.

Pete- I would ask each doctor and surgeon for a good, solid reason why not to get the surgery right now. It sounds like you're going to need it sooner or later anyway, so why not sooner?

But the dr says he would rather me wait for surgery, because I might need surgery again? Possibly 10 years from now.

I would not accept this answer on its own.

 

[MarkU]

I was asymptomatic until age 47 when I had a fairly rapid onset of shortness of breath, chronic fatique and fluid build-up in my lungs. When I got to the point after a few months where it was affecting my lifestyle I called my cardiologist. He listened to my heart for about ten seconds and said "It's time".

He suggested I schedule my surgery within the next three months. Since it was mid-December, I asked him how soon we could do it, so I might have a chance to use some of my holiday time from work. He made a cell phone call to the surgeon and found out he had an opening two days later, so we booked it.

The interesting part was going home that evening and asking my wife "Guess what I'm doing on Friday?"

Actually it worked out well that I had the surgery sooner rather than later for a couple of reasons. First, it turned out that I had developed some left ventricular hypertrophy and was at risk for permanent damage if I had waited much longer. And then six weeks after my surgery, my company closed and they cancelled our group health plan. Fortunately Aetna was super about continuing to cover follow-up costs for several months. Dodged a big financial bullet on that one.

Mark

 

[PeteCrev]

Hear, hear, Laurie! Another patient here who should have gone for surgery much sooner than did. Because of this, I have an uphill battle against CHF, low EF, and hypertrophic cardiomyopathy.

Pete- I would ask each doctor and surgeon for a good, solid reason why not to get the surgery right now. It sounds like you're going to need it sooner or later anyway, so why not sooner?



I would not accept this answer on its own.

Any thoughts why the cardio would say that? Mortality factor?? I Just dont know....

 

[Guyswell]

PeteCrev,

I'm another person who waited too long and developed permanent changes in my heart. If I could do it all again, I would have exercised more so I could have recognized my symptoms sooner and proceeded to surgery a year or more earlier. If you have symptoms and your valve opening has been reduced to "borderline severe", it's probably time to do something about it. If you're getting close, I can think of no advantage in waiting another 6-12 months. If you currently have good insurance, you may want to get this done before our country moves even closer to single-payer healthcare with long waiting times (pardon the politics but the current trend is troubling).

 

[Guest]

With me the progression was measured by echos. First I had the echo every 5-10 years, then every year and then every 6 months. It was clear that it was time, I did not have any noticable symptoms though.

If you were recommended to see a surgeon by your cardio, do so, they will give you a second opinion. My cardio thought I needed the surgery soon (~3month) when my echo looked bad, the surgeon said 6 month. I did it as soon as possible, within 2 months. After surgery, my surgeon said the valve was in bad shape and would have needed replacement soon. They can't really be super exact with echos etc.

Also a similar story with me; echos very six months or so showed me going from moderate to severe; ending with 0.8 with critical quoted to be at 0.6. I was told by two Virginia cardiologists that AVR should be done very soon, symptoms or not. After my last echo I began to feel some chest pressure and what had to be angina.

I was given the name of a surgeon near me in Virginia. When I contacted his office I was placed on a wait list to get an appointment. Two weeks later I was told I was still on the wait list! During the interim I decided to fly down to Florida since an old friend had told me that I could spend as much time as I wished in their home any time.

His wife worked at Sarasota Memorial Hospital and so she was able to find me a surgeon who seemed quite reliable. Talking to him and looking at my tests he said it's time for the AVR. I also established with a cardiologist near the hospital and got the same diagnosis. I had waited until symptoms appeared and truthfully felt I should wait no longer...

Joe

 

[PeteCrev]

Thank you everyone for the support. Met with one of the two prospective surgeons last week and he said it’s time, the sooner the better. And being only 38yrs old he recommended the mechanical valve over the tissue valve. So hopefully the anxiety and all the what if’s will be over shortly. Surgery in January 2014.

 

[Cooker]

Get A Second Opinion!!! The minute I started having the first symptom my cardiologist said lets get it done. The time for surgery is BEFORE you have perminate damaged to your heart. Good luck!!!

 

[bithead3]

I had no symptoms but an aneurysm with BAV. There was a lot of pushback from 5 surgeons about going ahead and doing the repair, they all wanted to wait longer, but eventually I convinced one after showing him a research article that suggested waiting longer was not beneficial at 5cm. Docs are people too, overworked, high-performing people.

CJ