To anyone who had to "push" for an early surgery

[genuis001]

50 yr.-old Male- Symptoms with moderate AS (BAV)-convincing my Dr.

I have an appt. with my cardio next week and I am expecting a battle. I have developed "mild" symptoms over the past six months and have been in to see him on several occasions. I've worn a halter for two weeks and had two echo's done. The problem from his standpoint is that my valve area is only at 1.2c. He has said that he usually doesn't even think of recommending anyone for surgery until they are at .9cm.
My symptoms have been numerous bouts of resting tachycardia (Hr=110-130), a great deal of daily fatigue, a good deal of dizzyness and a lot of crazy heartbeats (palpatations etc.). In addition, I think I have other significant risk factors: I'm very heat sensitive, I've got asthma problems that seem to affect my heart as well as that fact that I regularly need to take medications (Imitrex, prednisone, albuterol) for other ailments that are not good for my heart.
Psychologically, I've had enough. I don't think I can go on like this for another 1-2 years waiting for the valve to deteriorate. This has all been a significantly depressing situation and has affected every area of my life. I want to get beyond this.
He will say that my symptoms are mild and caused by the other factors (asthma, etc.). My view is "whats the difference"? Symptoms are symptoms.
How have you all pushed for an early surgery? Does anyone have any advice as to how to present my argument? Is a second opionion warranted if I cannot convince him?
Thank you for your help.

 

[kfay]

Even without symptoms, many of us find the wait before surgery to be the worst part of the whole thing. I was "lucky" in that I only had to wait 4 months and that was because I felt I needed that time to get things taken care of, my surgeon would have operated on me the first time I met him if I had gone along with it. You are certainly entitled to go get a second or even third opinion if that's what you want. You may also make an appt. directly with a surgeon. There is some thought that cardio's tend to like to wait until things are pretty bad before they will send you for surgery but that surgeons prefer to get in there and fix things before any permanent damage is done. It won't hurt you to get others opinions and may give you peace of mind, one way or the other.



Kim

 

[Bill B]

One very plausible interpretation is that your symptoms are not related to your BAV, and, thus surgery for that now would not resolve them. I would ask your cardiologist what he thinks is causing your symptoms. What were the results of the Holter monitor and echo? I fully believe in having the valve surgery done on the "early" side before there is much cardiac damage too. I'd still want some indication that surgery was needed, such as elevated pressures, ventricular enlargement and hypertrophy, and/or other abnormalities indicating the heart is struggling against the valve OR the valve is regurgitating (leaking back), in which case you could have symptoms from low cardiac output without the valve being very small. The echo would have revealed that. If your doctor does not think your valve is the source of your symptoms, then what does he think is the cause? Good luck to you. Someone should get to the bottom of your problems.

 

[Fundy]

genius001,

I was in a similar predicament several years ago; tight muscles that just wouldn't relax to the point they hurt, dizziness, moments of almost blacking out, headaches, frequent skipped heart beats(every 3 to 10 beats for hours),was taking max tylenol daily for year or more,cipralex,muscle relaxants etc... and it turned out aortic valve was just a bit larger than 1.0cm and stress echoes indicated not heart related.

I changed my diet to severely reduce acid ashe producing foods and beverages, and practiced deep breathing often. Within a month I was feeling good, and no more drugs; within a year feeling great. Still feel great actually even though valve is now at 0.75 cm and apparently needing replacement next month. Stress echo now not so good.

Basically for diet change I just switched to a spring water and drank a lot more glasses per day, replaced pop and coffee with green tea and juices, junk food snacks with vegetables and almonds. May not help you, but I thought I would mention it helped me a lot.

 

[genuis001]

Early symptoms

Early symptoms

Thank you all for your advice. I inadvertently failed to mention that I have daily chest pains.
Over the past six months, my syptoms have been induced by asthma, exercise, high altitude, dehydration, heat sensitivity, prednisone, albuterol and a couple of mystery attacks.
I understand that without my comorbid issues, I would probably have no symptoms at all. But I do. If my other issues are not able to be controlled, am I not in the same situation as a symptomatic person with severe AS? This is what I will need to convince my Dr.
My understanding is that it is risky to be symptomatic and "not" have surgery.
Thank you again.

 

[Mentu]

As you know by now, there is no generally agreed upon trigger for surgery. I began experiencing symptoms when my valve area reached 1.25 cm2 and my cardio was hesitant to refer me for surgery. Over the next six month the valve area dropped to 0.7 cm2 and my symptoms became debilitating. It was only when I began having chest pains, my cardio referred me to a surgeon. You might consider discussing with your cardio, the impact the symptoms are having on your life and mental state and tell him you would like a surgical opinion. If the surgeon agrees with your cardio that you should wait, you at least have a better idea of where you stand. If the surgeon disagrees, you have a sound basis for a more detailed discussion with your cardiologist. You might also want to check to see what your health insurance requires, that is, must your cardiologist and surgeon both agree about timing.

Larry

 

[scott.eitman]

Yes, I had a cardio that did not think I needed surgery. My opinion is that not all (pick your profession) are as qualified as each other. Some are better. You can fill that in with Carpenter, Auto Mechanic, Cardio, Surgeon... Push on and find a different Cardio.

Before my 1st, I felt tired ALOT. My cardio told me it was in my head. I figured it was time to build a relationship with 2nd opinions...and everyone else I saw (about 3 or 4) knew it was my heart. I had surgery 8 weeks after I saw a Cleveland Clinic Cardio. I never went back to the 1st Cardio. However I saw him at an Indians game after the surgery and after feeling much better. He actually told me that he still did not think I needed surgery.

Scott

 

[traveler]

Get a second opinion from someone outside your current cardio's practice.

Also don't be too eager for surgery. It's a lot more trouble than you might think and there is always a chance that the outcome is will not be what you hoped for.

 

[Nancy jane]

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Hi genius. I'm probably not the right person to answer however have recently gone thru same issue. I too want to
Do my procedure ( aorta replacement) while I feel pretty good. I am calling it elective & preventative. Just had one of two appts with surgeons & that's where I'd tell u to start. Get the names of 2-3 good ones in your area - come prepared w- questions. My cardio didnt think I was ready. Severe stenosis yet no symptoms. I told him I wanted to get this over while I feel great & not on my last breath. So I took it into my own hands. Made my appts & feel good about it. Seems surgeons are always ready & cards hold back. Not sure why.
What I am learning quickly is - it is our decision. Keep that in mind & if you don't have a copy pf Adam picks book PATIENTS GUIDE TO HEART VALVE SURGEry strongly suggest ordering it on line. Good luck & hope all goes well. Nancy

 

[Lynlw]

Hi Nancy, I'm really glad you joined and happy for YOU that you found Adam's book helpful and worth your money, however many of us would not only not recocomend anyone spend their money on it, but would even say you could probably find the same info and more here or all over the web- very often "word for word" surprisingly -and think someone could do much better things with their money, heck you could even make donatation here if you really want to spend money for the info AND help others.

 

[genuis001]

Updated

Updated

Thank you all for your help and support.

Saw the Dr. yesterday. My specs are still unimpressive in terms of needing surgery.
Area: 1.2 cm2;
Pressure: 36
Velocity: 3.1

It was also learned that there are no other blockages or obstructions.

He was very skeptical of my symptoms and I suppose he should be. All of my symptoms can be explained away except for the tachycardia. He had no explanation for that. I asked him directly if I was symptomatic and he would not answer. He seemed to listen to my situation and ultimately said he wanted to do a heart cath. I don't know if that is really necessary as it will just confirm the above stats.
I seem to be very heat sensitive and there are a cluster of related variables that seem to produce the tachycardia when combined with heat: asthma, (very mild) exercise, dehydration, high altitude. This past summer was very difficult in that I couldn't walk a block in the heat without my heart racing.
Even though "heat" seems to be the culprit, he is convinced that he should be able to quantify whatever is wrong through the tests. I'm not sure it will show up.
I'm not eager to jump into surgery, but I don't think I want to go through another summer like the last (yes, I told him that).
Even more worrisome though is the prospect of dealing with the heat while recovering from surgery. If it is hard on me now, what will it be like then?
Anyway, I'm going to see my gp on Monday and keep looking for something else that might be wrong.
It' not the bad valve that kills you, it's the wait.

 

[carolinemc]

I had my surgery while in humid weather and it is hard to deal with. But instead of worrying about the season, worry about the effects ion your general heath and keep trying to get a doctor that will listen or at least explain in more detail why the wait. It seems not to be too much to ask, but cardios are in a rush and won't explain things in greater detail. You keep fighting the battle, you will win. Hugs for today.

 

[tobagotwo]

I pushed to have my second surgery earlier. And it did go earlier than my cardio at the time wanted it to go. He wanted tpo wait as ong as possible: I wanted as little collateral damage as possible. I quit him on the spot,and went to another cardiologist, making my appointment with the surgeon for right afterward - without waiting for approval.

However, there are some things that go with it. I picked up all my records and presented my case to the surgeon.

...And I didn't go to him until my valve opening was under 1.0 cm². That is a serious criterion, as it's the arbitrary dividing line that allows the surgeon to proceed without garnering criticism from his fellows for having jumped to surgery too quickly. It can be found in the AHA-ACC guidelines regarding appropriate conditions for valve surgeries. Unfortunately, a number of cardiologists are getting the opinion that it can be left to get much smaller, based on their mosty common clientele - older, retired people. This doesn't work for younger or more active patients.

Your symptoms are annoying, disheartening, and sometimes painful, but you will be able to continue on with them for quite a while. The biggest issues are left heart enlargement and the valve area.

Hang in there.

 

[genuis001]

Thank you Bob, et. al,
I've got the heart cath. coming up next week so I guess I'm just waiting for more info. My GP has done some blood tests that didn't indicate any other causes of the tachycardia.
This is my confusion: Some of my symptoms (especially the tachy) could put me in (a) dangerous situation(s) such as being stuck out in the heat or having to walk in the heat. I guess it comes down to balancing out the risk. Is it more dangerous to not have surgery than to have surgery? From what you've said Bob, I might have trouble finding a surgeon who would operate, which might make my point moot.
Thanks again.

 

[Lynlw]

Thank you Bob, et. al,
I've got the heart cath. coming up next week so I guess I'm just waiting for more info. My GP has done some blood tests that didn't indicate any other causes of the tachycardia.
This is my confusion: Some of my symptoms (especially the tachy) could put me in (a) dangerous situation(s) such as being stuck out in the heat or having to walk in the heat. I guess it comes down to balancing out the risk. Is it more dangerous to not have surgery than to have surgery? From what you've said Bob, I might have trouble finding a surgeon who would operate, which might make my point moot.
Thanks again.

I gree with Bob that with your results valve area etc, unless there is something they find different in the cath, i think it would be very hard to find a surgeon who would operate. IF your symptons aren't caused by your heart, having surgery most likely wouldn't make a difference as to wether you have tachycardia or other symptons ornot.

How did your holter monitor turn out? since so many things can cause increased heart rates, does your tachycardia seem to be related to meds or heat or dehydration type things/ If so they probably would focus on fixing that, meaning make sure you drink alot of water in the heat or if it is really hot and humid try to stay in AC or at least dont do alot outside if you can help it, if one of your asthma meds can cause increased heart rates, then they might try different ones that type of thing

I know when Justin was really young he had bad asthma and some of the meds caused big problems with his heart, to the point he ended up in the hospital (he had 2 heart surgeries before he was 2 years old). So they changed meds and found ones that were better for him. But even when he was school age, if he was playing sports when it ws hot and humid if he didn't drink enough water (remember to drink before he felt thirsty) he would have really feel it. So we paid attention to what would seem to affect him and tried to work around it type things.