A little early but . . .

[mattwisconsin]

I am currently 30 and I have an artificial aortic valve, which was put in 17 years ago, originally a BAV. I started experiencing symptoms associated with my aortic stenosis for the first time in 17 years a couple of months ago. Recently they have gotten worse. I have a cardiologist appointment for early January. Unfortunately I travel often and am between places. I am currently living in Athens, Greece. I am a student in Columbus, OH (where my insurance is through), my girlfriend is in Chicago, IL, and my family is in Green Bay and Milwaukee, WI.

Although I don't know exactly what the cardiologist is going to say. I have not felt like this since just before my last surgery.

Basically I am looking for suggestions for surgeons in the Columbus, OH, Chicago, IL, or Milwaukee, WI area that people would think are good at what they do. I am also interested in the Ross Procedure, I know that this might be a little preemptive, since I don't know whether it will be a possibility, but suggestions in those three areas for doctors with a good amount of experience with it would be helpful.

Thank you for any help.

 

[WayneGM]

I can't help you with suggestions on surgeons in those ares, but welcome to VR. Glad you found us. I'm sure others more familar with those locations will be along shortly with possible suggestions. Best wishes and good luck.

 

[Karlynn]

Northwestern Memorial Hospital in Chicago has one of the best valve surgeons in the world and his team. Dr. Patrick McCarthy

You're 30 and you got 17 years out of your mechanical valve? That's terrific! I have 17 on mine, but I was in my early 30's when I got mine.

 

[ottagal]

Hi,

Sorry I can't answer your question, but wanted to wish you a warm welcome to this site.

 

[Dawn-Marie]

Hi ~ Sorry, i have no information to help you either. I just wanted to extend a warm welcome to this site. There will be plenty of people here who can advise you as to a good doctor.

Good luck with your appointment with your cardiologist next month and at finding a good doctor here in the U.S.

Happy Holidays!

Dawn-Marie

 

[Eva]

For Ross Procedure, there is Dr. Petterson at Cleveland Clinic in Cleveland, Ohio.

Good luck with your search and decision.

 

[mattwisconsin]

Thanks for the suggestions. I am sorry that I have not had a chance to respond to this until now. I have been traveling (still am) for the holidays. I am interested to see what the cardiologist has to say and to see if there are actually issues with my valve or if it is something else. Depending on what happens there, I will have some really hard decisions to make.

I am also glad to have found this forum. When I went through this 17 years ago, I was lucky enough to have met one other person to discuss these things with, where now I have all of the members here to draw on. Also it is great to participate in the warfarin threads, since I have been fighting many of these issues for 17 years and being able to find other people with the same problems is great.

 

[ponytaila1a]

Welcome to the site. You will find much help and comfort here.
Just wondering....in which city is your cardiologist?

 

[mattwisconsin]

Currently in Columbus, OH. Dr. Orsinelli, but this is recent. For many years I went to Children's Hospital in Milwaukee, WI.

 

[jerseysue]

reply to Matt

reply to Matt

Welcome to the site, Matt,
I don't know any Drs. to recommend to you, but the Cleveland Clinic is sure renowned for all the latest heart procedures. So if I were in that vicinity, I'd certainly check into that. All our best for your up-coming appointment. And it may be just a touch of anxiety you're feeling, and all will be well. I've experienced that. Keep us posted.
Sue Sommer
St. Jude aortic valve 8/1993 and still ticking!

 

[ALCapshaw2]

For the Ross Procedure, the most prolific Surgeon in the USA is Dr. Paul Stelzer in New York. See the Member Profile for StretchL who used Dr. Stelzer for his RP and made a "Photo Journal" of his surgery. The Link is in his signature line.

Dr. William Ryan in Dallas is another well respected RP Surgeon.

As others have indicated, the Ross Procedure is a more complex operation and definitely a Step Up from what your typical Heart Surgeon can provide.

If you are going to Ohio, The Cleveland Clinic would seem like your Best Bet.

Dr. McCarthy in Chicago came from the Cleveland Clinic (and is Ross' Hero)

'AL Capshaw'

 

[mattwisconsin]

Thanks. I was and still am hoping it is just stress, but the symptoms seem slightly too frequent and seem to be associated with exercise and started at a certain point.

 

[mattwisconsin]

So I have had my Cardiologist appointment and found out that my fears were warranted. It turns out from the Echo that the pressure gradient has increased by a third and with the symptoms I have been recommended that I need surgery. However, they want to do a TEE. I assume that this would provide the same info as the cardiac caths that I had before my last surgeries. After that I am probably going to need surgery. It is assumed that the valve is malfunctioning somewhat, but the details are unknown at this point.

So I am looking at having this done in Chicago (depending on my insurance) and so far the suggestion of Dr. Patrick McCarthy sounds good. However, I am also looking at finding a Cardiologist in this area. Suggestions would be much appreciated. I am more interested on finding someone who is a good doctor, than in bedside manner. However, if I can get both that would be great. Thanks again for all of your support here.

 

[Lynlw]

Matt, could you possibly shorten your address so we can see your eniter post? thanks

 

[Lynlw]

Are you seeing a cardiologist that specializes in Adults with Congenital Heart Defcts? if not you really should consider it. There is a listing of the ACHD Centers (and info about them) at http://www.achaheart.org/index.php you have to register to see the clinic listing, but it's free (They also have a great forum)

 

[mattwisconsin]

Thank you Lyn for the suggestions. I will definitely look into this.

 

[Mary]

Matt,
Since this is a redo at the age of 30, I would go with the best surgeon your insurance will allow. If it were me, and it will be someday since I have a 3 year old bovine aortic valve, I would go with McCarthy out of NW.

 

[mattwisconsin]

I am looking at the Northwestern Adult Congenital Heart Program for a new Cardiologist. Does anyone have experience with them. I still need to find out if they are in my insurance network. One part made it look like yes and another page did not.

Thanks again for well-wishes.

 

[Lynlw]

Matt, You could ask the people at ACHA since most go to ACHD docs there you might have more luck finding someone who goes to the center https://www.achaheart.org/for_members/message_boards.php

 

[AgilityDog]

Matt
The TEE will give them a more accurate picture of the valve than the echo. If they're going to open you up, they'll frequently also do a cardiac cath a day or two prior (while you are off coumadin) as the cath gives them additional info the TEE cannot, including whether you need a bypass while you are open (probably not at your age, but, one never knows). Either the TEE or the cath can also give them good valve size estimates.
Last week my echo said it was time for AVR, but the TEE said not yet--I have a small reprieve, but I'm not making book on anything longer than 24 months, myself. Anyway, prior to the TEE my Cardio said he would also do a cath the day before OHS/AVR. So frequently they do all of them prior to OHS. the tests do give different info.