Picking a surgeon

[djroy]

Hi. I'm Dan...new to these forums. I may be in the wrong one for this question so please let me know if so. I live in New Hampshire, USA, about an hour from Boston. As I consider options regarding surgery, one of the most puzzling questions is how to truely define the quality of surgeon and care. I live 1.5 miles from the New England Heart Center / CMC in NH, where I've heard mix reviews now. Alternatively I could go to Lahey Clinic Hospital, in MA...or drive into Boston.

If you had a choice, how did you go about picking where to have surgery?

I'm looking at reparing a dilated ascending aorta and replacing a bicuspid valve. Am 44 years old. And I'm learning more than I ever thought I would at this age about heart surgery. Sheeesh. Talk about putting things into perspective huh? Wow.

Dan

 

[Ross]

Hi Dan and welcome.

You'll want to find someone that specializes in surgery of the aorta. Boston should have a good pick. The best way to find them is to talk to the nurses in the cardiac surgery unit and get their opinions. They can tell you who is great and who isn't. The other option is to ask here and if someone has been there, they'll sound off.

 

[67walkon]

Dan, I'm 57 and looking at the same procedures on July 6. How small is your valve and how big is your ascending aorta? There are surgical guidelines out there.

The local heart surgeons scare me. I'm in the Palm Beach County, Florida, area. A number of them do these surgeries and treat them as routine, but they still scare me. The local hospital that does a lot of heart surgeries has had the worst infection rate locally.

I also need a maze procedure to cure a currently dormant afib issue. I read everything I could find about good surgeons in Florida, and the only guy I found who seemed to have good experience in all 3 procedures I need is at the teaching hospital connected with the University of Florida. I am a proud double alum of that school, so that helps. However, it is 4 hours away, so that is not good.

Nobody at Cleveland Clinic in Florida had the credentials to do what I need to have done. I didn't want to go to Cleveland, so that notable institution was out.

A guy at the teaching hospital at John Hopkins is really good on the 2 procedures you need, but I talked to his staff and he has never done a maze procedure. I crossed him off.

Ask around. See who others recommend. I sort of think sometimes that this surgery is pretty much a commodity, but you need to feel comfortable that your surgeon knows what he or she is doing and cares.

My wife and I both really liked the surgeon at UF. His name is Thomas Beaver. He gave me his cell phone number, he has called me a number of times, and it just feels right. You'll know it when you talk to the right guy.

On the other hand, the local people I've talked to rush me throught everything, don't want to answer questions and are impossible to get in touch with.

My decision was easy.

Good luck, and don't hesitate to ask.

 

[ALCapshaw2]

Dan wrote:

"I'm looking at reparing a dilated ascending aorta and replacing a bicuspid valve. Am 44 years old. And I'm learning more than I ever thought I would at this age about heart surgery. Sheeesh. Talk about putting things into perspective huh? Wow. "

YEP, nothing like being told that you need Open Heart Surgery to motivate one to suddenly develop a desire to learn all about it!

Your issues are more complex than the standard 'simple' valve replacement so I would recommend finding a Surgeon with lots of EXPERIENCE with your issues.

I suspect your best choices will be found at either Mass. General Hosp. or Brigham and Womens Hosp. BOTH are well represented on VR.com Hopefully some of their 'alumnai' will come forward with the names of good surgeons. You may find some of them by doing a VR.com SEARCH for each hospital by name. Click on SEARCH at the top of the page.

'AL Capshaw'

 

[susieq14]

Hi Dan!

And welcome to Vr.com but sorry that you have to be here.

I'm in the waiting room and have not researched surgeons yet but I think when it is time I will look into Mass General or Brigham & Womens as my first choice followed by Beth IsraelDeaconess. If you are willing to travel to Lahey in Burlington, you really should consider one of the big 3 in town.

I wish you luck in your research and in dealing with just dealing with the thought that you need OHS. It is very unnerving to say the least. Is this new news for you? or something you knew about that just got worse? Mine is new and what a shock - considering I have no symptons.

Take Care!
Susie

P.S. JDS just had his surgery at Mass General and Yankeeman is checking out the Brigham and FastEddie just had his at Beth Israel

 

[Adam 12-21-05]

Hey Dan,

First.... Welcome.

Second... It sounds like we have a good amount in common. I had my aortic valve replaced in 2005 because of the congenital bicuspid issue as well. Now, fifteen months later I'm back surfing again!!!

That said, you ask a very, very, very serious question about finding the right heart surgeon. There are several strategies for locating the right surgeon for you. It's not an easy task... Like so many of the processes associated with heart valve surgery. In fact, I dedicated an entire chapter in my book about this topic.

Anyways, due diligence is the key. As so many of the veteran VR.com folks will submit to you, "You have to ask questions! Lots of questions!!!"

Finding the right surgeon for me took a lot of time and.... Yep. You guessed it questions.

Luckily, I came across two heart valve gurus - Dr. Vaughn Starnes at USC and Dr. Alfredo Trento at Cedar-Sinai. Both are here in Los Angeles, California. Both, are very competent surgeons.

In the end, your gut will help you make the call. But, please make sure you get a second opinion. And, please make sure that you interview your surgeons. It is my opinion that consensus is critical given this serious nature of your impending procedure.

I hope that helps.

Cheers,

Adam

 

[Phyllis]

Hi Dan. You can't go wrong with Mass General or Brigham. Dr. Laurence Cohn did ****'s AVR at Brigham and we highly recommend him. At the time we were doing our research, we were interested in a surgeon who would do minimally invasive and also use the newest Edwards magna valve and Dr. Cohn fit that bill. You can go to http://www.usnews.com/usnews/health/best-hospitals/tophosp.htm
and fine the hospitals that are rated best in cardiac surgery.

 

[yankeeman]

Ditto on Brigham & Women's and Dr. Cohn. He's replacing my bicuspid valve on July 2. I'm hoping his minimally invasive approach means I won't be sitting around for two months.

I live only 40 miles from Boston, close to the turnpike, so it's easier for me to get to Boston then you from New Hampshire. But I figure if you're looking for someone who's going to stop your heart for a few hours and cut it apart, it's probably worth the trip.

Best wishes. My brother lives in Hollis.

 

[WayneGM]

Hi Dan,

Welcome to the VR community. Sorry to hear you have to have OHS but glad you found us.

Our health system is different here, but for what it's worth, here's how I picked my Surgeon. My long-time GP, who I trust totally, discovered my new heart murmur during my annual check-up. Knowing absolutely nothing about heart issues or surgery and I asked my GP to recommend and refer me to a "good" Cardiologist. I met with him and I liked him, so I looked no further. When it came time to get the heart surgery, my Cardiologist asked me whether I wanted to have it done in Hamilton, which is closer, or Toronto. That said, he recommended Toronto and in particular Dr. David, if I was willing to have it done there. I said go for it, and the referral was made. I met Dr. David, I liked him, so I looked no further. As it turns out, Dr. David is world renown as a heart surgeon. However, I didn't know that at the time and only discovered that later after the surgery was already scheduled. In other words, I placed my trust in my doctors to steer me in the right direction and they did. Despite not getting any second opinions, I'm quite confident I got the best advice and care possible.

Good luck.

 

[Arlyss]

Hi Dan,

Because you need more than a simple valve replacement due to your enlarged aorta, I want to emphasize what Ross has already written about finding someone with expertise in the ascending aorta. The valve decision is very important for everyone, but when the aorta is also involved, it adds another whole dimension to the surgery.

Aortic surgeons certainly also replace valves, but those who are valve and bypass surgeons primarily will not have the experience with the volume of cases and sophisticated techniques on the aorta that I would want if this were my chest.

Others have mentioned various options near you. I will just point out that one of those has a Center which focuses entirely on aortic disease, including bicuspid aortic valve disease, which you have - here is that link

http://www.massgeneral.org/tac/

Best wishes,
Arlyss

 

[tcopel]

I had surgery on the ascending aorta and also had a aortic valve repair recently and had the same questions you did. The aortic valve repair (called the David procedure) is a relatively new surgery and I certianly did not want someone practicing on me as their first case. Many here at VR were extremely helpful and I cannot say enough about their help. I wondered how one can actually know how good a surgeon is, as most surgeons can pretty confident in their abilities despite their track record. As mentioned by others, get someone who specializes with aortic aneursyms. Ask upfront to the surgeon how many of the procedures he has done. I found the CV's of the doctors I had in mind online to get an idea what his training has been. I had visited with 2 surgeons in their clinic, talked to one on the phone and emailed Dr. David who kindly reviewed my studies I sent him and responded quickly to my questions (amazing doc). The bottom line is to do your research. Of course, I know having a dilated aorta puts a premium on time and you certianly dont want to wait too much. Recommendations by your VR brethren regarding facilities seem good as already noted above. I went to a teaching facility, so I ask the attending surgeon to please do my surgery from beginning to end. I didnt particularly want a new resident working on me so he kindly said that he would do so. Your doing the right thing, ask ask ask.

 

[Mike C]

I strongly encourage you to take the drive to Boston. MGH and BW are at top of game for not only cardiac care but hospitals in general. Go to the best.

Cant go wrong with either one. I chose Alan Hilgenberg at MGH and was happy with him. He has done a ton of the surgeries you need, inlcuding mine. He is but one name of many good surgeons at both hospitals.

you can email me privatly if you have questions

how big is the aortic root/ascendign aorta?

 

[cherbam]

Hi DJRoy,

I had my surgery done at MGH by Dr. Gus Vlahakes (I'm 42). He was great. Three new valves and two and a half years later I'm doing awesome. My 84 yr neighbor is having Gus do his Aortic Valve on July 16th. Feel free to ask any questions !!!

 

[Fast Eddie]

How I chose Ralph de la Torre as my surgeon

How I chose Ralph de la Torre as my surgeon

Hi. I'm Dan...new to these forums. I may be in the wrong one for this question so please let me know if so. I live in New Hampshire, USA, about an hour from Boston. As I consider options regarding surgery, one of the most puzzling questions is how to truely define the quality of surgeon and care. I live 1.5 miles from the New England Heart Center / CMC in NH, where I've heard mix reviews now. Alternatively I could go to Lahey Clinic Hospital, in MA...or drive into Boston.

If you had a choice, how did you go about picking where to have surgery?

I'm looking at reparing a dilated ascending aorta and replacing a bicuspid valve. Am 44 years old. And I'm learning more than I ever thought I would at this age about heart surgery. Sheeesh. Talk about putting things into perspective huh? Wow.

Dan

Hi Dan

3 weeks ago I had and ascending aortic aneurysm repaired and an On-X mechanical AV inserted. I chose Ralph de la Torre at Beth Israel in Boston. Ralph specializes in complex aortic surgery and has done many of these procedures. I chose him because of his good reputation for being one of the 'go to' guys in Boston, and because a co-worker was a patient of his several years ago and she thought very highly of him. When we met with him to discuss my situation, he was very personable and willing to spend as much time as we needed to be comfortable with the procedure.

And his people are accessible via email! Any questions I had were responded to ususally in a matter of hours. In fact this is true for ALL my doctors at Beth Israel. All are very good at responding to email questions. Good for peace of mind.

I would also strongly urge you to make the drive into Boston for this surgery. Any of the hospitals mentioned in my and other posts will easily handle your situation. Brigham and Women's and MGH are absolutely top notch for this surgery as well as Beth Israel. Why take a chance with something that is this complex and important to your future?

One of your biggest choices will be whether to choose a tissue or a echanical valve. That is a big decision fir you. I chose the On-X mechanical valve to avoid having to have a second OHS at the age of 70 - 75. But with a mechanical valve comes being on Coumadin for life. There are lots of discussion in VR.com about valve choices. Spend some time reading there.

Note:
The On-X valve is in clinical trials which may EVENTUALLY allow those of us who have one to not need Coumadin. But this will not be definite for at least several years.

Good luck and let us know what you decide.

Fast Eddie

 

[DeWayne]

Let me just say that in my learning about this stuff a little over a year ago. I found that it is more important to find the surgeon who has the experience with the aorta over the valve. It is the more difficult part of the operation and the one you want to make sure you have the right guy doing. I was fortunate in my case to have Emory Hoslital in Atlanta with a heart surgeon who's specialty is the aorta, Dr. Edward Chen.I was told people come from all over the world to see this surgeon, for me he was local (whew).
There are a lot of guys who can do a valve, not as many who understand and have the expertise to do the aortic graft.
Also you say the aorta, but you mention nothing about the root. If you need root replacement that may change how you pick your valve. I needed the root replaced as well, and since the on-x valve does not have a collar for that type of attachment I was guided to other choices.

 

[brd]

Hi Dan, This is a little repetive but since you may be counting - I also live in NH a little further from Boston than you are (Dublin) and though I am still in the Waiting Room I am probably going to have Gus Vlahakas at MGH do the surgery. He came highly recommended to me and I know quite a few people on this forum have had him as their surgeon.

We are lucky to live so close to Boston.

Good luck and feel free to PM me. I have met with Dr V already and it confirmed my decision.

Barbara

 

[dlangton]

Boston area referral from cardiologist

Boston area referral from cardiologist

I had a bicuspid aortic valve and got all my tests and treatment (including AVR surgery) at Bellevue Hospital Center in NYC, but before finally scheduling the surgery I went for a second opinion to a cardiologist in the Boston area while visiting up there, and he recommended Dr. Hilgenberg at MGH and Dr. D'Agostino at Lahey. He told me these are the surgeons he'd go to himself, so I'll just pass along the names although I have no experience with these surgeons.

I wish you all the best...

 

[djroy]

the picking a surgeon question

the picking a surgeon question

Hi folks. Wow I really appreciate all your input and suggestions!! It's taken me a while to respond but I've been reading them all as they come in. Much to think about.

At this point I'm working to reconcile 1st and 2nd opinions, which differ in measurment of my aortic dilation and therefore suggest different time periods for looking at surgery. A 3D ctscan reconstruction was done (after my asking) and I have another appt this week to see if we can tie this out.

You've all given me great questions to ask, to think about, to research. I'm very appreciative!! One of the key things I learned is to focus on an aortic surgeon (volume and success) rather than "just" a valve replacement surgeon.

Man this is all just so weird. I'm told to restrict my lifting just about the time Patty and I are planning to move her things into my house (planned before learning of the aortic dilation). Geez. This stuff impacts not just us, but the folks who love and care for us too. I imagine their sense of powerlessness is greater than ours (as in those of us gifted with heart issues).

Anyway, rambling here, but again, thank you!

Dan

 

[djroy]

I read the posts again...amazing how hard it is to internalize some of this the first time through. Some of you asked questions, which I neglected to see in my first reading.

Dilation size...not sure yet. Original cardiologist said "almost 5cm". 2nd opinion (who is a surgeon) said "between 4.0 and 4.1". Hmmm. Quite a difference there folks! Then had a 3D reconstruction done and now original cardiologist says "between 4.5 and 4.6".

So I'm going back to Dr. #2 this week with all my movies and films and records to say, "okay, now what do you think". Once this is reconciled, I'm not at all adverse to seeking a third opinion to validate the info, just to be sure. In fact, I will get that third opinion validation, just to be darn sure.

Is it my root or ascending? I don't know yet. Dr. Endo, my original cardiologist with Lahey first said root. I said, "how's my ascending". She said it's the ascending that's dilated. Oh, not the root? I'm confused. I'm also pretty sure I won't stay with Dr. Endo. When I asked if I could have Dr. Westbrook (2nd opinion surgeon) talk with her or the radiologist, she said that would not be necessary. Well maybe not in her opinion, but in mine is dang sure is necessary to understand why the numbers are so different. I want a doctor who's very open to talking with other doctors if I ask.

Someone suggested a local (Manchester, NH) cardiologist named Dr. Jim Flynn. I have an appt scheduled with him. He used to be at St. Vincent Hospital in Worcester, MA but apparently founded the Nebraska Cardiology Center before that.

In the end, I'll surely visit with a boston area surgeon for validation, etc.

By the end of this week, I expect to reconcile at least the first two doc's opinions...and to understand root versus ascending, and to interview Dr. Flynn as a local tracking cardiologist as well.

One thing I'm learning very quickly is that nobody cares about my surgery as much as me...and as you've all said....ask, ask, ask.

Thanks again!

Dan

 

[Jkm7]

I strongly encourage you to take the drive to Boston. MGH and BW are at top of game for not only cardiac care but hospitals in general. Go to the best.

Cant go wrong with either one. I chose Alan Hilgenberg at MGH and was happy with him. He has done a ton of the surgeries you need, inlcuding mine. He is but one name of many good surgeons at both hospitals.

you can email me privatly if you have questions

how big is the aortic root/ascendign aorta?

Dr. Alan Hilgenberg at MGH did my bypass surgery and if/when it comes time for my mitral valve surgery, chances are good I will return to him. I have only good things to say about him. He took very good care of me and I came in very ill and requiring emergency surgery.