too many choices

[MarkRose]

Hi all,
I'm new to this board. I am planning on having a 2nd AVR in January.

My first one was in 1991 in Beth Israel MC in NYC, due to a bicupsid valve and bacterial endocarditis. I was 24. I got a tissue valve because I planned on having children, and the Ross wasn't an option because of the infection. The tissue valve has worked wonderfully for me these past 14 years. I have one son who will be 3 yrs old in December. He was born in Brazil, and I had no complications with the pregnancy or the delivery, even though the valve was already 11 years old.
I have to make TWO big decisions:
1- WHERE to have the surgery - Brazil or New York
2 - WHAT kind of surgery - mechanical valve or Ross procedure

I live in São Paulo which has the biggest and best heart hospital in South America. I feel confident about the surgeons and medical staff there. The surgeon's opinion is to put in a metal valve with no coumadin therapy afterward. He says that in Brazil they have been doing this for some time with AVR, with excellent results. My husband will be with me and my son. It will be summertime and warm in Brazil, and I will be able to recover in my own home. I have heard good things about the surgeon, and I felt very comfortable with him, but I am not 100% sure of his skills and he is against the Ross.

On the other hand, I have the opportunity to have my surgery performed by Dr. Paul Stelzer at Beth Israel in NYC - and he is recommending the Ross Procedure providing that everything is OK with my aorta. He did say that there is a small possibility that on actually going inside and seeing the situation, he may have to go with Plan B - which would then be a mechanical valve. Dr. Stelzer's track record is amazing, and his skills undoubted. There will be more people available to take care of my son (he can't stay with his dad) On the down side, my husband will not be with me and NY winters can be harsh. I will have my recovery in my parents' home, which is not the ideal place.

Sorry this is so long, I really need some feedback!
Thanks so much.
Margaret

 

[sylviayasgur]

hi margaret,
welcome to this wonderful site.

i have never heard of a metal (mechanical?) valve without coumadin therapy, but maybe i've been in the dark.... if that's the case, someone else will come forward and let you know.

as far as where to have the surgery, this is a difficult decision. many people here_ including myself_ will recommend you find a surgeon you love and go there to have it done. others feel that staying closer to home is more comfortable. neither is a right or wrong way to go, it's a very personal choice.

i can only tell you that joey and i adored dr. stelzer and would recommend him highly to anyone needing vr surgery. i know others here who have used him and have been equally happy with their outcomes and with having had him as their surgeon.

still, the final decision rests with you...your husband and son would be with you in sao paolo, the weather is easier to handle there, etc.
on the other hand, despite the bad winters here, the surgeon is very reputable in ny.
would you consider asking the surgeon's office (in brazil) for names of people the surgeon has operated on so that you might call and talk with them and ask questions?
i wish i could help more. although it's great to have choices, it makes it more difficult to decide what to do.

wishing you all the best.
be well, sylvia

 

[MarkRose]

thank you Sylvia!
It's wonderful to hear from someone who knows Dr. Stelzer! I found him very charming and intelligent, and he obviously knows his stuff. He works with the surgeon who did my first AVR in 1991 - Robert Trambaugh. So it sort of feels like going home to have the surgery in BIMC.
Would you mind telling me -
How was the recovery after the Ross?
How is your husband doing these days?
thank you so much for taking the time!
regards, Margaret

 

[Phyllis]

You might also want to private message "Shine on Syd" who had Dr. Seltzer. It's always hard to make a decision to leave home for surgery, but many times it is the best option and with luck, you may be able to return to Brazil within a two week period.

 

[MarkRose]

Thanks for the suggestion!

 

[Mary]

I talked to Dr. Stelzer several times before my AVR, and he is a wonderful human being. I had the utmost confidence in his surgical skills and wanted to have the Ross Procedure performed by him. Unfortunately I developed more problems before we finalized a surgery date, and I chose to have a tissue valve implanted in St. Louis rather than wait.

If you don't get a quick PM response from Shine_on_Syd, send me a PM, and I can get in contact with him. We talked alot before surgery due to his association with Dr. Stelzer, and we have remained in touch.

Finally, if you're not sure of the Brazilian surgeon's skills, I would be hesitant to use him as your surgeon. A second surgery is sometimes more technically difficult than the first, and I would want the very best surgeon I could get to do my replacement.
Good luck and PM me if you need to.
Mary

 

[MarkRose]

thank you Mary!
I will definitely PM you if I need to. Sorry you didn't get what you wanted. Hope you are doing well with the alternative.
Best, Margaret

 

[Ross]

A mechanical valve without anticoagulation? I'm not so sure I'd want to take that risk. Can't see getting fixed up, all to stroke out and live as a vegetable.
Of course, I'm sure someone somewhere is doing it and probably are seeing good results, just wish it were here.

 

[MarkRose]

It doesn't sound right to me either. If I go with the mechanical valve, I will definitely take the blood thinners. I don't HAVE to take the surgeon's advice.

 

[tobagotwo]

Do you remember the brand or model name or anything else about the "metal" (actually carbon) valve your surgeon was going to implant? I am wildly curious as to which valve they are trying to do that with.

If you were to have one implanted by Dr. Stelzer, you would have Coumadin with it, I am quite certain.

You should also try to hook up with Deboraginastewart, a veteran of a number of OHSs in Brazil. She may have opinions of Brazillian surgeons. Try to PM her, or join the chat on Sunday, as she's usually there.

Best wishes,

 

[MarkRose]

Hi Bob -
No I don't remember the name, I don't know why I didn't write it down.
I will try to find out and get back to you.
Thanks!

 

[MarkRose]

hi Rachel -
Yes, I definitely DO NOT want to have to go through a 3rd surgery if it can be avoided.
The issue about the type of valve is coumadin vs a higher risk surgery (Ross).
Mechanical valves are pretty routine, but Ross isn't.
thanks for the input.
Regards, Margaret

 

[dcpickle]

Margaret,
I got a Ross from Dr. Stelzer a year ago. I know we all have a tendency to idolize our surgeons when we have a good outcome, but having had dealings with quite a few doctors (including a few surgeons) I can say without hesitation that Dr. Stelzer is a cut above the rest. He's a very special man who takes quite an unusual personal interest in the patient.

My wife and I had a great experience in NYC for a few days after my surgery. It was a special time we look back on fondly, now. All in all, it was a great experience (considering my chest was cut open and... well, you know)

PM me and I'll tell you more. I love talking about my experience but I feel like a shill for Dr. Stelzer when I do it openly here!

(BTW, I feel great now. I had a few problems with some pericardial inflammation, but once that was over, I've felt great ever since.)

David

 

[MarkRose]

hi David -
I just sent you a message. I like to talk about my experience too. I loved the time after my AVR surgery. The time leading up to it was awful, because I had bacterial endocarditis, and until they diagnosed it, I was suffering, and then BAM, 24 years old, newly married and emergency open heart surgery - SCARY.
But I always remember the 2 weeks after as a very safe, very loving period of my life because I received such wonderful care from the entire staff of the CSICU.
Now that I have to go through it again, I feel so lucky to have found this community and very blessed to hear from such good people such as yourself.
Looking forward to your response to my PM.
All the best, Margaret

 

[Curtsmum]

A mechanical valve without anticoagulation? I'm not so sure I'd want to take that risk. Can't see getting fixed up, all to stroke out and live as a vegetable.
Of course, I'm sure someone somewhere is doing it and probably are seeing good results, just wish it were here.

I woudn't fancy taking that risk. All the best of luck, hope everything goes well

 

[MarkRose]

thanks Paula,
I am definitely NOT planning on doing it that way.
take care, Margaret