BAV and Aneurysms

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Geordie97

I am a 53 year old male, 6'2 205lbs. I was born in 1955 with a
congenital bicuspid aortic valve,. I had an aortic commissurotomy in
1967 and a valve replacement in 1975 (27mm Bjork Shiley Conical Disk
Valve). In 2006, I was diagnosed with CHF and put on beta blockers and
diuretics, which work fine. Not too long ago, while playing on the
internet, I found a website (http://www.bicuspidfoundation.com) that
related difficulties that had a BAV were having (including my spinal
problems and my hiatal hernia). Well, based on that info, and after a
discussion with the Director of Aortic Surgery at Cedars-Sinai Hospital,
I convinced my cardiologist to do a CTT which, last week, revealed a
5.3-5.4 cm aneurysm on my ascending aorta. :( So, now I'm looking for a
specialist and hospital to go to so I can have the surgery to repair
this before I have a blowout.
 
Hello Larry and welcome aboard. How far are you willing to travel or is it even an option?
 
Welcome Larry,

Dr. William(?) Ryan in Dallas is a well known Aortic Surgeon.

Dr. David McGiffin seems to be the "high risk" guy at The University of Alabama in Birmingham but I'm not sure if he is an 'aortic specialist'.

Vanderbilt University in Nashville is another good Heart Hospital but I don't know who their Aortic Specialist is.

Dr. Kouchoukos in St. Louis, MO is a well known Aortic Specialist.

'AL Capshaw'
 
ALCapshaw2 said:
Welcome Larry,

Dr. William(?) Ryan in Dallas is a well known Aortic Surgeon.

Dr. David McGiffin seems to be the "high risk" guy at The University of Alabama in Birmingham but I'm not sure if he is an 'aortic specialist'.

Vanderbilt University in Nashville is another good Heart Hospital but I don't know who their Aortic Specialist is.

Dr. Kouchoukas(sp?) in St. Louis, MO is a well known Aortic Specialist.

'AL Capshaw'
Click to expand...

That's why I was asking how far he would be willing to travel. You have the Southern U.S. and I have the Northern. Most likely can find someone really close to home though. :)
 
Hi folks...thanks for the responses. As soon as I was told about the aneurysm, I contacted Dr Raissi and sent him a cd with the CT and Echo on it for his review. He promised to give me a list of questions to ask potential surgeons. As I am writing this, I am scanning in all of my cardio records from the last 3 years to email to the Drs. We are hoping to get this started and to travel to ?? around Sep 7 so we can get it over with and not have to keep worrying about a blowout!

As far as traveling, we will go anywhere we have to to find the best Dr and hospital that is covered under my insurance. I do know that Memphis doesn't have anyone that I would trust.

These are the hospitals and surgeons I'm talking to:

Vanderbilt Heart - Nashville, TN Dr John Byrne
Johns Hopkins, Baltimore, MD Dr Duke Cameron
Weill Cornell - New York, NY Dr Leonard Girardi
Mt Sinai - New York, NY Dr Randall Griepp
Cedar-Sinai, Los Angeles, CA Dr Sharo Raissi
 
Geordie97 said:
Hi folks...thanks for the responses. As soon as I was told about the aneurysm, I contacted Dr Raissi and sent him a cd with the CT and Echo on it for his review. He promised to give me a list of questions to ask potential surgeons. As I am writing this, I am scanning in all of my cardio records from the last 3 years to email to the Drs. We are hoping to get this started and to travel to ?? around Sep 7 so we can get it over with and not have to keep worrying about a blowout!

As far as traveling, we will go anywhere we have to to find the best Dr and hospital that is covered under my insurance. I do know that Memphis doesn't have anyone that I would trust.

These are the hospitals and surgeons I'm talking to:

Vanderbilt Heart - Nashville, TN Dr John Byrne
Johns Hopkins, Baltimore, MD Dr Duke Cameron
Weill Cornell - New York, NY Dr Leonard Girardi
Mt Sinai - New York, NY Dr Randall Griepp
Cedar-Sinai, Los Angeles, CA Dr Sharo Raissi
Click to expand...

If you're willing to go anywhere and your insurance covers it, then I'd go to Dr. Raissi.
I'm surprised that with several members mentioning Dr. Kouchoukos in St. Louis, and knowing that he was on the BAVD board at one time, he's not on your list. St. Louis is probably just a few hours farther than Nashville. Dr. K did my surgery, and his team at Missouri Baptist is outstanding.
 
While I really like Dr Raissi after talking to him, my only problems are that, if we go to L.A., my wife won't have any type of support system and, without transportation for her, she would have a hard time getting to/from the hospital from the hotel, which wouldn't be close as the close ones are VERY expensive. At Vanderbilt, we would be closer to home and in NYC, we have family. Here is who I am currently looking at:

Vanderbilt Heart - Nashville, TN Dr John Byrne
Johns Hopkins, Baltimore, MD Dr Duke Cameron
Weill Cornell - New York, NY Dr Leonard Girardi
Mt Sinai - New York, NY Dr Randall Griepp
Cedar-Sinai, Los Angeles, CA Dr Sharo Raissi
 
I would add Craig Miller at Stanford to any "aortic specialist" list.
 
Actually, I thought about him but just don't really want to go west.
 
OK, I'm curious.

Why did you NOT include Dr. Kouchoukos in St. Louis, MO.

He is CLOSE and from what I read here on VR.com, is one of the BEST AORTIC SURGEONS in the country.
 
Dr. Joseph Coselli in Houston is excellent and one of the top three aortic surgeons in the country if not the world.
 
Actually, Dr. Kouchoukos did not show up in my research at all. I was researching hospitals and Drs and reviewed the U.S. News report on the top hospitals for heart and heart surgery. All of the top 6 were on my list but I also needed to find one where my wife could have a good support system while I was undergoing the surgery. The NYC hospitals will allow her to stay with my family and still be close by, plus...being a former New Yorker...it's the only place I can get my pizza sauce transfusion!! <vbg> Of course, once I talk to the surgeon this evening, I may change my mind as I need to find a Dr I feel comfortable with. Luckily, in my job, I have to be able to judge people very quickly and I'm very good at it.
 
Johns Hopkins !!

Johns Hopkins !!

Duke Cameron at Johns Hopkins just replaced my aortic valve and replaced the root which had a 5.1 cm anuerysm on June 13 , 2008 ! I biked twenty miles yesterday..pacemaker and everytrhing !! Twenty miles the day before too !!
 
I emailed Duke Cameron, who was suggested to me by my brother-in-law (and internist)'s cardiologist but did not receive a reply. My current plans are for surgery by Leonard Girardi at Weill Cornell.
 
I watched a video of Girardi performing a valve sparing operation called the modified david procedure on or-live.com, I think. Certainly knew what he was talking about.
 
Thanks Aaron. That's good to hear as Hi Ho, Hi Ho, it's off to New York we go! My surgery is scheduled for Sep 10, 2008.
 
http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=1450820&pageindex=1#page

what was on page 478 lol. I see that this is dated roughly a year before my surgery and the last paragraph comes from the doctor that performed my surgery in March of 1959.

I guess I was just behind this report! I am glad to say I am still here so what ever it was they figured out it worked. I think I will set a new goal in life. To become at some point the oldest living suvivor of being on a heart lung machine lol.
 
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