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Q

queenie

Well-known member
Joined
Jan 16, 2008
Messages
64
Location
Lexington, SC USA
I went to see my original surgeon (Dr. Douglas Murphy) in Atlanta and he no longer does valve operations. He specializes in the Davinci Robot now. I have an aortic mechanical valve that has apparantly has restenosed. The valve area had to be enlarged to accommodate at 19mm in the first place. If I have a tendency for scar tissue growth, I need a surgeon that can perfom a redo successfully and give me as long as possible between the next one. If you know of an extremely competent surgeon specializing in redo's and complicated procedures, I would really appreciate your input. I'm willing to travel. Thanks in advance
 
Hi--I'm not sure how far you are willing to travel, but, I had my mitral valve replaced for the second time seven months ago. My cardiologist referred me out of town to Vincent Gaudiani in SF. He does alot of redos and difficult surgeries. He was great and I am glad I went to him because I had a lot of scar tissue from the first surgery which caused a great deal of bleeding in surgery so I was lucky that I was with someone with that kind of experience. When I went for my consultation he gave me a published report detailing the kinds of surgeries they do and their success rates.
 
I would prefer not going to the west coast. I am open to cleveleand or anywhere east. I have family in Raleigh, nc so I'm investigating Duke, I just haven't seen anyone very impressive from there yet. I will probably travel in a motorhome for optimal comfort for the ride home. Oaktree, I saw on another thread you mentioned a limit on OHS for valve replacement. Have you read that somewhere? I am very concerned about that since I am only 47 years old and this will be #2. How many more can I have?
 
I'm just guessing here and maybe others will know, what about looking at Duke University? I see you're only a state away. The surgeon that did my VR went to Duke shortly after to teach.
 
Queenie, I'm sorry you need your valve replaced. may I suggest you look for a surgeon that operates on adults with CHD. IMO they have the most experience on operating on patients that have had multple redos (4 or more) so have alot of expeiernce dealing with the issues that make repeat surgeries, like scar tissue, more difficult. The Adult CHD forum has a list by state of ACHD centers but you have to register to access it http://www.achaheart.org/for_members/clinic_directory.php
as far as how many surgeries can you have, well less is better, but I know of hundreds of kids and adults that have had 3 or more. As the adults that were born with more complex CHD reach adulthood, the surgeons are getting even more experience in redos. lyn
 
Karylynn, I would love to go to Duke, I am hoping for a recommendation of someone terrific there. That would be the best case scenario however, if I have to go farther I will.
 
Tom F. said:
Try this guy at University of Chicago. He is supposed to be the "go to" doctor for high risk surgeries.

http://www.uchospitals.edu/physicians/valluvan-jeevanandam.html
Click to expand...

Hi Tom,

I have no doubt whatsoever that Dr. Jeevanandam is an excellent surgeon & so I mentioned him to my cardio because I am on the side-lines for a 4th OHS to re-do my mitral mechanical valve & my cardio said after looking Dr. Valluvan on the internet, quote: "I'm not really that impressed because it appears to me that he specializes in "heart transplants" & out of all the different kinds of heart surgeries, heart transplants are the easiest to do, so I think you'd be better off w/the surgeons in Houston where all your medical history is!" end quote. I was flabbergasted! How do you reply to that?!

You can bet that I will be looking for the best surgeon available for risky re-dos just as Queenie's doing!
 
queenie said:
Norma, why do you have to have your mitral valve replaced?
Click to expand...

To make a very long story as short as possible --- I had my 1st OHS in 1975 where they implanted both the Aortic & Mitral valves. A few months later, after my first surgery in 1975, I had to go back to Houston because the Mitral valve had torn loose from the surtures & the surgeon had to go back in & resew it, as best as I can describe it. I lived a perfectly active & great life for 31 years & then in 2006 I had to have the Aortic valve re-replaced with a new mechanical valve because scar tissue had formed over & around the leaflets causing it to malfunction. I had severe CHF before the surgery which was the determinating factor.

When the surgeon replaced the Aortic valve, he said that the 31-year old Mitral valve appeared to be working fine so he decided to leave it alone & did not replace it. In hind sight though, I'm sure he wishes that he had because a few months after the surgery in 2006, I started having CHF again & went back to Houston in 2007 where they determined that the mechanical mitral valve is malfunctioning & has to be redone! :eek: But they told me that the amount of scar tissue in & around the valve, as well as the rest of the heart is so massive, that it looks like "cooked spaghetti that has fused together" under my sterum & behind my heart as well. So, it's a mess in there & I am just vying for more time before I have to reach the point of having to get it done & facing the music, come what may!!!
 
Queenie

Queenie

So..did not Dr. Murphy..have any other surgeons to recommend?...He is part of my surgeons....from the Peachtree Cardios.from Atlanta...Mine was Dr. Brown..but I saw Dr. Murphy for my 3 week post-op...(so handsome:) )..I know there were 11 surgeons there 6 years ago..Now, have added 3 more very experieced ones....they are now coming up to Gainesville, Ga. to the #1 Heart center in Ga...the Ronnie Green Heart Center..3 years in a row for Ga. BEST heart Center....I am surprised that he did not recommend one of his on Fellows?:confused: ..bonnie
 
queenie said:
I went to see my original surgeon (Dr. Douglas Murphy) in Atlanta and he no longer does valve operations. He specializes in the Davinci Robot now. I have an aortic mechanical valve that has apparantly has restenosed. The valve area had to be enlarged to accommodate at 19mm in the first place. If I have a tendency for scar tissue growth, I need a surgeon that can perfom a redo successfully and give me as long as possible between the next one. If you know of an extremely competent surgeon specializing in redo's and complicated procedures, I would really appreciate your input. I'm willing to travel. Thanks in advance
Click to expand...

Queenie,

The ONLY valve that I am aware of that has a built in Barrier to Pannus Tissue Growth is the On-X Valve. (See www.onxvalves.com) On-X also claims to have the Lowest Gradients for small sized valves, another plus.

The Low / No AntiCoagulation Studies using On-X Valves were instituded at Emory University (Emory Crawford Long Hospital) in Atlanta, GA under the direction of Dr. John Puskas who is the Head of CardioThoracic Surgery at Emory. Dr. Omar Latouf (sp?) performed a Double Valve surgery on one of our members who had extensive Radiation Damage and a previous Lung Surgery after she had been turned down by another surgeon. These are two of the most experienced surgeons with the On-X Valves. GOOGLE Dr. John Puskas and you will easily find his background.

FWIW, with your history, I expect you could simply call any surgeon's office of interest and they would consult with you without referal.

'AL Capshaw'
 
Regarding the valve, the one I have(carbomedics top hat) is also designed to retard pannus growth. Big Woop!!! Not to smash the on-x. It certainly didn't retard it for me. I took your previous advice and saw Dr. John Puskas----I will just say his credentials look better than his actual clinical skills turn out to be. He was very nice, but, my husband and I felt we were starring in an episode of HOUSE. He was all over the place with diagnosis. And had me do extra testing that his cardio felt was unnecessary and turned out it was.

Norma---Did you have tests done to confirm your pannus? Which ones?
 
Interesting Feedback.

You may want to contact our member Betty (BVDR).

She had her surgery at Duke with Dr. Glower who has received many favorable reports here on VR.com
FWIW, she is also a retired RN.

'AL Capshaw'
 
Hi Queenie -

You asked about pannus; there is a member here, Arlyss, whose husband has suffered from that and here is one of her informative threads about it in which I hope you may find some helpful information: http://valvereplacement.com/forums/showthread.php?t=19222&highlight=pannus
If you want to do an advanced search, you can find other threads of hers with pannus information.

Also, I'm sorry for the situation you find yourself in and hope you and your husband find an excellent doctor. Take care and please keep us posted.
 
Here is the list of surgeon out of Emory. http://www.emoryhealthcare.org/departments/cardiac_surgery_adult/about_us/staff.html

In October my Atlanta cardiologist had me go see Dr. Stephen D Clement a cardiologist at Emory Healthcare for a second opinion. His phone is 404 778 5299. Dr. Clement was friendly and is a professor at Emory. The surgeon that my cardiologist told me to see if it was time for aortic valve surgery was Dr. Edward P. Chen. Do a search on valve replacement com for Dr. Chen one of the members used him as a surgeon. When I had some out patient testing done at Emory everyone was friendly and they sent me a form to rate their quantity of care. The best thing too was that they sent me a form to inform me that my balance for the bill was 0.

At Saint Joseph Hospital the surgeon that people have used is Dr. James Wolfe. He also does the Ross. I have talked to one person about six years ago that had a Ross from him and another person I used to work with that had a pulmonary valve replace with him. They both like him. There also has been more than one member of valve replacement member that have used Dr. Wolfe. Most the surgeons at St. Joseph came from Emory. I am still in the not time for surgery yet with a moderate to severe AR. When the time comes for me I will have to decide which hospital to use. That will determine the surgeon I used.

Investigate doctors at the state medical board at:
http://www.ratemds.com/filecache/SelectDoctor.jsp?sid=11
 
queenie said:
Regarding the valve, the one I have(carbomedics top hat) is also designed to retard pannus growth. Big Woop!!! Not to smash the on-x. It certainly didn't retard it for me. I took your previous advice and saw Dr. John Puskas----I will just say his credentials look better than his actual clinical skills turn out to be. He was very nice, but, my husband and I felt we were starring in an episode of HOUSE. He was all over the place with diagnosis. And had me do extra testing that his cardio felt was unnecessary and turned out it was.

Norma---Did you have tests done to confirm your pannus? Which ones?
Click to expand...

Queenie,

The surgeon of course that performed my last surgery in 2006, was witness to all the scar tissue (pannus) in & around the valves. He admitted that he had a very tough time when he did my Aortic (I was in surgery for 4-1/2 hrs.) so I guess that's why he was so reluctant to tackle the mitral. And of course before the surgery, they performed a TEE, Cath & Echo. In June/2007 when I went back to Houston, they did Echos, Cath & the TEE, which clearly shows the pannus everywhere.
 
Hi queenie. I had pannus ingrowth on the leaflets of my tissue valve. I've been told this happens to mechanical valves as well, am I right in guessing this is what has happened to you, too?

My surgeon opted to replace the aortic root with the valve on the second surgery in the hopes that the pannus cells would be less likely to precipitate onto the incision, out of the blood, if he did. The jury's still out on that one, since, although he moved the scar on the aorta further from the valve site, he had to create two more scars for the cardiac arteries to attach. I am a walking fear case these days since I've got arrhythmia and SOB. I hope to see the cardiologist soon.

I can't help you with a surgeon choice since I'm in Canada. I think you have just as competent surgeons there and you don't need a passport to see them, either. Best of luck.
 
Pamela, I too have wondered if replacing the aortic root would help the pannus situation. Yes, my valve is mechanical, so apparantly like Norma, my body betrayed me, not the valve.

Norma, I was scheduled for a TEE and cat scan tomorrow however, my insurance won't pay for those porcedures if they are outpatient. I have to back up and punt now. I am only 47 so I want to make good decisions about this surgery since it looks like I will need more in my lifetime. I so appreciate all of your input.
 
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