Choosing a surgeon

[MaryG]

Thanks for all the welcoming posts. I am so glad that you are all back here on the forum -- believe me, you were missed.

From reading your posts I see that many of you travel quite a distance to have your surgery. I have been mulling over my options about that. Our regional hospital in Asheville, NC has a well-regarded heart center, but I’m thinking they may not do a large number of valve replacements there on people with BAV. Duke is also a possibility, I’m sure they must do a much higher number of these surgeries there each year. Many of you also seem willing to travel to the Cleveland Clinic from quite a distance. Is that a better option for people that are having a repeat OHS, and maybe not quite as important in the case of a first surgery?

I would welcome your opinions on this, and also would like to hear from anyone who has experience with having their surgery at Duke.
Thanks for all your help.
Mary

 

[kfay]

Hi Mary, I am one of the ones who travelled a pretty good ways for surgery, from Charlotte to the Mayo clinic in Rochester MN. I did so because my heart condition is pretty rare and there aren't a lot of surgeons around who have much experience with it. If it weren't for that, I probably would have stayed much closer to home. My first surgery, many, many years ago was at Duke. As I recall, they were really great to me and the surgery that I was having at the time was considered experimental. They are ranked number 8 on US News for heart surgery hospitals and I think you can't go wrong with them.

Kim

 

[Maryka]

Duke is probably a good place to explore. A friend who just moved to NC was saying that Duke is the best place for her to go for her multiple sclerosis (no heart problems). Big teaching hospitals are a good gamble. A neighborhood hospital in FL (where my good Marfan friend had her last OHSa before dying) is NOT a good gamble. If you have choices then explore them. Best of luck!

 

[ALCapshaw2]

As a BAV patient, the Most Important requirement in a Surgeon would he How Much Experience he has with BAV and also Surgery of the Aorta "just in case" you have a connective tissue disorder and / or an Aortic Aneurism. These kinds of Surgeons are most often found at Major Heart Centers (such as Duke or CC or Mayo).

You need to know and understand that Surgery of the Aorta is a Big Step Beyond "mere Valve Replacement" surgery. Your Surgeon needs to be able to recognize 'poor tissue' in the aorta and be prepared (with knowledge and experience) to deal with it if you should have such an issue.

 

[Cooker]

I’m fortunate to live in a town with a long standing major heart hospital and experienced surgeons ... If I had not been comfortable with the local facilities and surgeons I would have explored other options ... don’t be afraid to ask questions ... don’t worry about offending any surgeon you talk with ... it’s your heart and your life ... best of luck

 

[MaryG]

Choosing a Surgeon

Choosing a Surgeon

Thanks to you all for your helpful comments about choosing a surgeon.

When I went to my cardio in June, she seemed concerned about my echo results – (valve area change from 1.4 cm2 to .9 cm2) but never once mentioned the word “surgery”. She went through a list of symptoms, none of which I have had so far, and then said she wanted to see me again in six months to repeat the echo.

I have been checking the web for info about surgeons at Duke, but am wondering if I am rushing things, since the doctor never mentioned surgery to me. From what I have read here it sounds like I am not far from meeting the standard for needing surgery, but the doctor doesn’t seem to think it will happen soon (at least not for six months.) I have read posts here that say that once the valve gets worse, it continues to get worse, only quicker. So, that makes it look to me that I should be checking things out. Do people ever contact surgeons before their cardio recommends surgery – it seems like the cardio should be on board too, before taking that step.

What has been your experience with the correct order to deal with these details?

Mary

 

[Tbone]

It never hurts to plan ahead. Continue on with your research, and asking questions. I have had surgery at the Mayo Clinic, and at the Cleveland Clinic and I am happy & comfortable with both. I would also feel very comfortable at Duke. I know a few cardiologists who have gone there.

I am considering surgery now & if I have it, it will be at Cleveland 60 miles away from my residence, and very soon.

I wish you continued good health, and I hope everything goes well for you in the future.

 

[ALCapshaw2]

With an Effect Valve Area of 0.9 sq cm, I would begin interviewing Surgeons NOW.

Old School Cardiologists are notorious for wanting to postpone surgery until you are showing symptoms (sign of DAMAGE to your heart) or on your Last Gasp. To my mind there is NO BENEFIT to waiting until further damage is done.

You could ask your Cardiologist for a recommendation to a Surgeon with Lots of Experience with BAV Patients AND who also has Lots of Experience repairing / replacing the Aorta (just in case you have 'tissue issues').

Alternatively, you can Self Refer to any Surgeon you are interested in. All you need to do is tell them you are a Heart Patient with BAV who will likely need AVR Surgery (and possibly Surgery of the Aorta) in the not too distant future. They will want you to bring or send in copies of your last Echo Tape and any other tests you have had done (such as Heart Cath / Angiogram, TEE, etc.)

Dr. Chen at Emory University in Atlanta has been refered to as "THE Aorta Specialist in the SouthEast". I do not know if/who has Lots of Aorta Surgery experience at Duke.

IMO, it is the Surgeons who are the real Valve Experts.

Happy Hunting !

 

[MaryG]

Choosing a Surgeon

Choosing a Surgeon

I am considering surgery now & if I have it, it will be at Cleveland 60 miles away from my residence, and very soon.

Tbone --

Thanks for sending along the good wishes.

The fact that you live so close to CC certainly is one bright spot in the situation you have been dealing with -- at least you know that you will get excellent care if you do have the surgery.

Best of luck to you and hope all goes well for you.

MaryG

 

[MaryG]

ALCapshaw2 --

Thanks for your advice. I'm sure it's true as you say, that once it gets to a certain point there can't be any real benefit in waiting -- waiting for what???

MaryG

 

[COLLEEN S]

Mary,
Google yourself til you cant anymore...do your research...then let god and your surgeon do their work.

 

[RobNDenver]

I lucked out and found that two of the best heart surgeons in the US practice in little old Boulder CO because they love it here. So I didn't have to travel to have my OHS.

If I were in your shoes, I would learn what I could about Doc's at Duke, and have your SO or supporter stay at the Washington Duke Hotel adjacent to the campus while you are recovering. Lovely hotel, familiar with the hospital routine and a very professional reassuring staff . . .

 

[BackDoc]

I have a friend, an orthopedic surgeon who had a valve replacement at our local hospital--they advertize as the "heart center". Long story short--he almost died, and his wife had him airlifted to Duke--that is where he went to medical school. They saved his life.

I don't think you can go wrong at Duke. But you can go wrong at any local hospital, that claims to be a heart hospital.

I don't want to hurt anyone's feelings, but there is abig difference between a surgeon who primarily does by-pass procedures and has only performed the occasional valve replacement, versus the surgeon who does primarily valve surgeries, and only the occasional by-pass procedure. Same with the ICU team and their experience, as well as the OR team.

 

[ALCapshaw2]

I have a friend, an orthopedic surgeon who had a valve replacement at our local hospital--they advertize as the "heart center". Long story short--he almost died, and his wife had him airlifted to Duke--that is where he went to medical school. They saved his life.

I don't think you can go wrong at Duke. But you can go wrong at any local hospital, that claims to be a heart hospital.

I don't want to hurt anyone's feelings, but there is abig difference between a surgeon who primarily does by-pass procedures and has only performed the occasional valve replacement, versus the surgeon who does primarily valve surgeries, and only the occasional by-pass procedure. Same with the ICU team and their experience, as well as the OR team.

I've been Preaching that very sermon for years.

Thank You for providing a compelling example of the consequences of using a Local (mostly ByPass) Hospital for more complex Valve Surgery.

 

[MaryG]

I have a friend, an orthopedic surgeon who had a valve replacement at our local hospital--they advertize as the "heart center". Long story short--he almost died, and his wife had him airlifted to Duke--that is where he went to medical school. They saved his life.

I don't think you can go wrong at Duke. But you can go wrong at any local hospital, that claims to be a heart hospital.

I don't want to hurt anyone's feelings, but there is abig difference between a surgeon who primarily does by-pass procedures and has only performed the occasional valve replacement, versus the surgeon who does primarily valve surgeries, and only the occasional by-pass procedure. Same with the ICU team and their experience, as well as the OR team.

BackDoc--

Thanks for your input on this subject. That's a pretty scary story and a very convincing one. I will definitely rule out the local hospital and continue checking out the Duke website.

 

[MaryG]

ALCapshaw2--

The post by BackDoc certainly supports what you have been saying. Before I came to this forum I thought that heart surgery was just heart surgery -- I didn't recognize the differences in complexity and risk between the various procedures. It's clear to me now that getting a highly experienced surgeon and team is essential. Thanks for your input.

 

[Braveheart]

The idea is to go to a well respected heart hospital. When you do your research, you will find that many of the hospitals have not only the c.v. of their doctors, but in what they specialize. You would want a doctor who has done many similar procedures as yours, and who has dealt with many of the contingencies he/she might face.