BAV and Aneurysms

[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.

[Ross]

Hello Larry and welcome aboard. How far are you willing to travel or is it even an option?

[ALCapshaw2]

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'

[Ross]

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'

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. :)

[Cooker]

Hi Larry and welcome to the zoo! ... A great place to get help with information and support!!

[Geordie97]

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

[Mary]

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

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.

[Susan BAV]

You could search the names of your surgeon preferences here, if you have the time and inclination to do so, and possibly find some members who have gone to them and communicate with them directly.

[Geordie97]

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

[Ross]

There is my old Doc, Pat McCarthy at Northwestern in Chicago. You've got an excellent list running.

http://nmhphysicians.photobooks.com/profile.asp?pict_id=5235&LastnameSearch=Y&Lastname=mcCarthy

[Taylor]

I would add Craig Miller at Stanford to any "aortic specialist" list.

[Geordie97]

Actually, I thought about him but just don't really want to go west.

[ALCapshaw2]

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.

[MrP]

Dr. Joseph Coselli in Houston is excellent and one of the top three aortic surgeons in the country if not the world.

[Geordie97]

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.

[Read]

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 !!

[Geordie97]

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.

[Duff Man]

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.

[Geordie97]

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.

[rdouglas302]

Good luck Larry!!

[DeWayne]

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.

[DeWayne]

Oh and Larry, I have been through just what you describe, just find the surgeon with the most experience in the aorta, valve is secondary to that.

[scrappy47]

Best of luck to you as you make these important decisions. I have had two heart surgeries, one at age 35 to replace my unicuspid aortic valve and one at 55 (just over a year ago) to fix an ascending aortic aneurysm. The doctor choice for me lead to me dr joseph bavaria in philadelphia who was phenomenal along with his extended team. I am blessed to be alive and know you will feel the same way when this is behind you. I think it's important to be near family if that is a support system for your spouse especially. My doctor wanted me local to him for about a month after the surgery so i did not have to go back to florida where we live-was able to stay with loving family for that month. What a great help that is! Use your common sense. You will make the right choices.

[Eric]

Larry,
Dr. Raissi did my surgery almost exactly three years ago. I interviewed several docs before choosing him. He is a great guy in addition to being a great surgeon. I still speak with him often and would highly recommend him; although others, in their responses above, have mentioned surgeons with great reputations as well.
Good luck with your decision. Let me know if you choose Dr. Raissi. I will try to help you out with local logistics.

[Geordie97]

After much discussion and research, we finally decided to travel to New York-Presbyterian - Wiell Cornell Medical School and see Dr Leonard Girardi.

On 9/11/08 (not my choice date for surgery in NYC but he had an emergency come up on 9/10/08), Dr Girardi cracked my chest for the 3rd time (first in 1967, 2nd in 1975), and repaired an ascending aortic aneurysm that was measured at 5.4cm and extended from the valve root in to the arch. He also replaced the aortic valve (again) with a St Jude Valve. On 9/18/08, I was released from the hospital for outpatient care via the Guest Facility at the Helmsley Medical Tower (next door). We have been out walking, as best that I could to build up my strength and even walked from Times Square back to the Tower (approx 3 miles) on 9/23/08. This morning, after a visit with Dr Girardi, I was released to travel back to my house in North Mississippi and I CAN'T WAIT! As most of you are aware, I'm tired, sore, and want to go home.

I do have one question for all of you. Since I came out of the anesthesia, I have noticed that my teeth are extremely sensitive to hot and cold. I think I remember the same thing when I had my back surgery (or maybe it was a previous heart surgery), so I'm wondering if it is a response to the ansthestic? Dr Girardi said he had never run in to this but his Nurse Practitioner thinks she remembers hearing it is related to the anesthetic.

[Susan BAV]

Glad to read your informative post, Larry, and happy to read you are doing very well. There really is no place like home. Regarding the teeth, I don't recall that particularly but wonder if it is kind of similar to how food tastes so blah to most of us post-op. Travel safe and take care.

[blauer]

I have a similar issue, BAV and Enlarged Aorta. I live in Denver. I can't seem to find out about the Aorta surgery centers in Denver and surgeons names to contact. Can anyone help.
Thanks.
Bill

[escargome]

Don't know if you can travel, but as has been recommended here by other members

Cedar-Sinai, Los Angeles, CA Dr Sharo Raissi

Good Luck on your research....

[blauer]

Thanks Susan, I have been reading the information on that site. Bill

[ALCapshaw2]

There are some Good Aortic Surgeons in California.

Dr. Laks at UCLA
Dr. Craig Miller at Stanford

come to mind.

Do a Search on VR.com to find members who have used their services.

[Bina]

Sensitive Teeth: it's funny that you mention this, because I had it also.
My dentist confirmed that nothing was physically wrong and over time it has improved somewhat.

[carolyncox]

Hi Larry, hope you are doing well. Amazing this being your third surgery and you had your valve replaced again as well as having your aorta replaced. All the very best for your recovery.