News from NYC cardiologist appointments

[PapaHappyStar]

Hi all --

I am back from NYC: eventful trip! The echo at the Columbia Presbyterian showed that the mean gradient across the valve was 61 mmHg -- this was more than twice as bad as the initial echo three months ago. The doctor was puzzled by this progression and it is likely that the initial echo was a mis-measurement. I had also described mild chest pain so they decided to do a cardiac catheterization since the severity and presence of symptoms indicated surgery. This revealed a gradient of 70 mmHg.

The doctor thinks I am a good candidate for the Ross operation, the surgeon doing the Ross at the CPMC is Jan Quaegebeur, his track record is pretty impressive. The only question I have is: given he is a top-flight pediatric surgeon many of his Ross operations have been pediatric, is the operation sufficiently different for adults that is it better to seek out a surgeon who does Ross procedures mainly in adults?

Glad to be back home.....

Burair

 

[Bryan B]

Burair,

I can only give my experience, but the surgeon that did my RP is the chief of pediatric cardiac surgery at Duke Medical Center. His specialties are congenital heart surgery, pediatric heart transplants, and the Ross Procedure. I think that most surgeons that are experts in the Ross are typically pediatric surgeons by nature, but also do them on adults as well. I would ask him how many RP's he's done on adults and what his success rate is. I asked my surgeon these questions and his answers put me at ease. One nice byproduct is that my scar is only about 5" long. I attribute this to him being used to working in small spaces.

Sorry to hear about your accelarated progression, but glad you have a plan in place to move forward with your surgery. If you would like to "shop around" I will be glad to give you my surgeon's contact info.

 

[Guest]

Burair,

First...glad you are back home! And, thanks for calling tonight...it was good to hear from you. Hopefully we can arrange to meet in person tomorrow....

As for your question, I agree with Bryan. My surgeries have all been performed at Chicago's Children's Memorial Hospital...and I've had good results thus far with them . You may want to shop around before deciding where to have the surgery performed....

Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html

 

[LUVMyBirman]

Hi Burair,

Welcome back. Happy to hear you are getting to the bottom of issues. Have found in the past that the echos are only as good as the tech and the MD reading the results. After some misreadings while living in another state...I demanded the head of echocardiography of the hospital to preform my echos. He was excellent. Now living back in Chicago...have received some mixed signals. They gave me a scare of an EF of under 35. Sent for additional tests and it was nowhere near that number. Good to see you headed outside the city for your consult. I am set against having surgery here..unless it's an emergency. Too many cooks in the kitchen. If it can't be avoided...then I will wish for Ross's man, Dr. McCarthy from Cleavland. Now at NWU. Take care and keep us posted.

 

[MichyB]

Hi Burair. I'm glad you received answers to some of your questions. I have an appointment with Dr. Rosenbaum in two weeks. I am hoping he can answer some of mine. Keep us posted.

 

[Mary]

Burair,
To give you another name--Dr. Stelzer is at Beth-Israel in NY. He's doing my Ross.
Mary

 

[Shine_on_Syd]

Burair,
As Mary well knows I recommend you talk to Dr. Stelzer at Beth Israel in NYC. He has done more Ross procedures than any other practicing surgeon in the world. In fact he improved the Ross procedure concurrently with Dr. Ross. Aside from his superior surgical skills, he is very easy to talk to and a wonderful person.
I traveled from New England to NY for him. I am a firm believer in the Ross Procedure.
When he saw the poor condition of my pulmonic enough he was experienced and skilled enough to think on his feet to abort the Ross and go to plan B. Turns out I had the exact same condition as Arnold Schwarzenegge. Thanks to Dr. Stelzer?s savvy they avoided making the same mistake the did on Schwarzenegger, who required a second operation having his Ross procedure reversed and received a porcine.
Stelzer is a superior Ross Procedure surgeon and that is what you need with that procedure.
If you send him your test results and ask him to call you he will.
Here is his conact information:

Email address [email protected]

Paul Stelzer, MD
317 East 17th Street
New York NY 10003
Telephone (212) 420-2584
Fax (212) 420-2321

http://www.docnet.org/physicians/phys_bios.asp?phys_id=139

 

[PapaHappyStar]

For me there is a 5 mmHg gradient across the pulmonary valve that appears on both the echo and the cath, there is usually none, the cardiologist is not sure about the cause of this. I am interested in learning about yours and Mr. S'egger's condition, perhaps I can have a talk with the surgeons etc. about this as well.

I had written to Dr. Stelzer and talked to his office on the phone before going to New York, I think I will probably head down to NYC to have consultations with both surgeons again and then decide.

Thanks,
Burair

 

[PapaHappyStar]

Hi Burair. I'm glad you received answers to some of your questions. I have an appointment with Dr. Rosenbaum in two weeks. I am hoping he can answer some of mine. Keep us posted.

He's a good doctor, be sure to ask him a lot of questions, he is a composed guy, dont think you will ruffle his feathers.

 

[Shine_on_Syd]

Burair,
If you go back to NYC I think it would be smart to sit down with Dr. Stelzer and an alternative to a RP surgeon with a ped background.
There were two situations in my operation that where not the norm and Stelzer took command and I respect his eperience, skill and knowledge. Maybe his background w/adult patients gave him that ability, I can't say. He is a premier RP surgeon.
My first consult with him was 2 1/2 hours. If you have any trouble getting by his office, just let me know I will cut through that for you. Dr. Stelzer and I have a close relationship.
Jim

 

[tobagotwo]

It has always appealed to me that pediatric OHS is even more delicate and exacting than adult surgery, and a slight error would hold more significance to the patient's outcome. I would feel good with a pediatric surgeon.

Sounds to me like you've got things well in hand, Burair. It can be difficult to do the things you need to do with your head while dealing with the rest of your psyche. You've done a lot. I hope you and your family are holding up well through this.

Best wishes,

 

[Guest]

*pokes head back into thread*

Hey Burair...it was great meeting you, your son, your wife and your friends today .

And, just as I figured, you have some wonderful advice from people on here. Good luck!

 

[Harpoon]

Let's put it this way:


An adult heart surgeon works on an organ about the size of your average orange.

A pediatric heart surgeon works on the same organ, only it's usually about the side of a walnut, the size of most newborn hearts which is generally where most pf pediatric heart surgery is done these days.


The technical precision and "ART" of pediatric heart surgery is probably one of the most refined and specialized segments of medical practice there is. There is no real margin for error, no second changes. You do it, you do it well, or the kid dies.

A pediatric heart surgeon working on an adult patient, an adult heart, is using that same precision, that same attention to the FINEST detail. They're not slacking off because they have a bigger piece of meat to work with either...


Granted, some pediatric heart surgeons are better than others, same holds true for adult cardiac surgeons.

You will also find that not all surgeons who deal with adult patients are used to or even comfortable with working on problems of a congenital nature.

If you have a heart defect that you were born with and you are over 21, you're still going to be better off seeing a pediatric heart surgeon.


Oh, and by the way, they ALL started out working on adult patients. Pediatrics (whatever the sub-field) doesn't get trained until after you've proven yourself by working on adult patients.

 

[Mb]

Hello All:

I've little knowledge of the Ross, but did read all of the posts, particularly with regard to the gradients. My husbands most recent echo (post surgery) showed increases in both trans-aortic and transmitral gradients. Both increases mentioned in the summary. His transaortic gradient is 43 (this is the peak number). Could any one explain why it might be increasing post surgery, what, if any impact this has on his overall health, etc.? I am most interested in any comments.

Marybeth

 

[sylviayasgur]

hi burair!
sorry i haven't replied sooner... haven't been on much....
my husband, joey, had his ross procedure done 3 yrs ago (sept. 20) at beth israel by dr. stelzer.
i (we), too, like james (shine-on- syd), think the world of him.
we had consulted with a regular (non-ross specialist) at columbia as well upon highest recommendation from joey's cardiologist, but opted for dr. stelzer after consulting with him for about 2 hours. the man is incredible.

i happen to know that jan quaegebeur is an amazing ross procedure specialist (in fact, if i'm not mistaken, he is THE ONE you would want to do the ross on a child). i can't imagine that he's not right up there with dr. stelzer, considering that in dealing with the miniature hearts he works with, he has a much more intricate surgery to perform.

i know joey was paul stelzer's #304 and that was 3 years ago. i can't imagine he hasn't done over 500 yet.....
i suggest you meet with him.
i think you would be in the best hands with either of these two men.

incidentally, we went with dr. stelzer because we have a friend who used to be a cardiothoracic surgeon. he no longer practices due to illness, but consults. he worked with dr. stelzer for many years and could not recommend another surgeon to do joey's surgery. he said he was one of the most brilliant doctors/ heart surgeons he had ever met in his life.
he is also a great person, which you will see when you meet him.

i wish you all the best of luck in your decision.
please feel free to email me anytime at:[email protected]

hope this helped,
sylvia

 

[PapaHappyStar]

I agree Dr. Stelzer and Dr. Quaegebeur are both superb surgeons, I am probably in the happy position of being able to choose between them. Dr. Q is booked until late Nov -- I will talk to him on the phone Friday afternoon. I havent yet got a consultation date with Dr. Stelzer, but his office has been extremely conscientious about checking whether my insurance will pay ( they will ). I will try to get a date tomorrow.

I dont really know how to decide between the two, but late November is probably quite good for us ( I can spend the winter in bed -- like I have wanted to do every winter in NYC/Chicago anyway ), I think I'll spend some more time studying the procedure and listen to the surgeons.

Here is something interesting I found:

http://www.ctsnet.org/doc/2380

Thanks for your help and support.

Burair