Looking for the BEST Surgeon for the job...

[Daffodil82]

Okay...I"m new here and was referred her by a gentleman who posted the link on a WebMd forum. I am coming close to my fourth open heart surgery at the age of 21 due to my mechanical valve finally kicking the bucket. I am looking for the BEST surgeon around for my Aortic Valve Replacement. From the "statistics" the best heart hospital is in Cleveland, but is that where the best surgeon is? I was flown to the University of Alabama in Birmingham back when I was 7 for surgery...the best surgeon at the time performed the surgery. However he has now retired and I am in need of another surgeon. My mother and I will fly ANYWHERE in the US for the best treatment available. Being that this is my fourth time, my cardiologist is nervous and is pushing back the surgery. I am not too happy about his decision because I"m a "Let's get it done and over with" kind of person. I'm not scared, just anxious to get it over with. Who is the best surgeon for Aortic Valve Replacement?

 

[Ross]

http://www.clevelandclinic.org/hear...d1=&keyword2=&specialty=Cardiac+Surgery&cnt=2

 

[Creed3]

Hi!
I know when I had my AVR a year and a half ago, one of my docs told me that I should have the surgery done where the best of the best are. I was sent to Cleveland Clinic. They told me that Dr. Lars Svensson was the one who was going to do my surgery. I was told he is one of the best if not the best in the world. He specializes in aortic cases. Right before I went in for my surgery, I was very scared, anyone would be. The nursing staff asked who would be doing my surgery and when I told them, they said well then, what are you worried about. Everything will be just fine. They may say that to everyone, but it made me feel a little better. You can go to the Cleveland Clinic website and check out the information on Dr. Svensson or you could just do a search on Google. His credentials are very very impressive. Good Luck with everything and let us know how things progress.

Take Care!
Gail

 

[ALCapshaw2]

Hello Daffodil,

It's hard to argue about the Cleveland Clinic.

I sent you some pertinent information on your 'other' hospital in a Private Mail which you can access by going to the bottom of the page, finding the Forum Jump box, scroll UP to the top, and click on Private Mail.

'AL'

 

[Bryan B]

There are several great surgeons for you to choose from. Many here have gone to Cleveland Clinic and it is the highest rated heart hospital in the country. Duke is number 4 I believe, and several people here have had their surgeries done by Dr. Glower and Dr. Jaggers at Duke. I'm about to undergo VSD repair and Ross Procedure by Dr. Jaggers. He is the Chief of Pediatric Cardiac Surgery at Duke. I believe Mayo Clinic and Brigham and Young hospital round out the top 4. I don't think you can go wrong with any of these places. I'm sure several others will be along with their experiences as well.

 

[RCB]

So young for that many surgeries!

So young for that many surgeries!

Daf,
My heart goes out to you for all you have been through at
your age. It relatively easy to do aortic surgery the first time on a young person like you, but when you have already had three
before, it puts you in the high risk area. Make sure the surgeon
you get handles high risk cases. CCF just lost one of the best in the world (McCarthy) to NW and it has made many people feeling terrible. It will be sometime before he will be up to speed!
Having gone through 3 different aortic valves myself, could share with the forum what type of aortic valve you have now and what is wrong with it? Also, why did they attempt a repair on top
of a repair?
Good luck in your search- don't settle for second best!

 

[Daffodil82]

Here We Go!

Here We Go!

Well... Since you were curious about what valve I have and why all that I've been through...
At this point I have a St. Jude's number 19 prostetic aortic valve. I was actually diagnosed with Aortic Stenosis since birth and I have had the same cardiologist all along. He's wonderful and I couldn't ask for a better doctor. He has quite a reputation in Maryland and even though I'm not "pediatric" anymore he continues to see me. The bond is so tight that we joke I am the reason he no longer has hair!
My first surgery was performed while I was two to correct a hole that formed in the valve. Then at the age of three they chose to replace the valve as I was going into CHF from the valve growing closed. I'm still a little foggy on the details and I pester my mom constantly in an effort to extract all of the information she has on my medical past. (SO MUCH TO REMEMBER :-/) Then at the age of seven we flew down to the UAB and was operated on by Dr. Pacifico by what is known as the Ross-Kono procedure. Is that right? Gee I feel so confused! I have already exceeded the expentancy of my valve and it is starting to fail. I have had a total of five catherizations and the most recent one was in December. It also showed that my Mitral valve is starting to malfunction. We have also had problems with the Pulminonary, however Dr. Pacifico repaired the problem while he was in when I was seven. No problems there now.
My doctor consulted with the other physicians at his practice and they opted to hold of the surgery until it was necessary due to the high risk. They didn't want to go in too soon. I personally would rather go in while I'm still "healthy" then when my CHF gets worse. (It appears to be starting already) Blah... Soo much information! Sorry guys!

 

[ALCapshaw2]

Daf -

You may be interested in knowing that Dr. Pacifico is still operating at UAB, along with Dr. Kirklin, son of the founder of the Kirklin Clinic, who is now retired, and a delightful Australian by the name of Dr. McGiffin who I believe specializes in high risk surgeries.

Did you see my Private Mail message?

'Al'

 

[RCB]

What a story!

What a story!

No need to be sorry, you have been through more than
most people on this forum. We are glad you are here!

 

[Daffodil82]

Thanks!

Thanks!

Thank you so much. You guys have been so helpful and it's great to meet people who are dealing with the same kind of heart problems. I'll be visiting this site for life. My mom is excited to hear that Dr. Pacifico is still a practicing surgeon at UAB. She always travels with me when I go to have surgery and she loves Alabama. I'm definately going to keep up on this forum...so much information! :-D

 

[tommy]

Daf,

I haven't weighed in on your questions, but certainly want to welcome you to this forum. I wish I had discovered VR a long time ago, but am thankful now. What a blessing.

Best wishes to you.

 

[labguides]

Dr. Laks at UCLA is our HERO. He specializes in heart/lung transplants, but he did our daughter's mitral valve repair in 01/04.

 

[SJJ]

Daf,
I responded to your PM and now that I've had the time to read your "story,"I hardly know what to say except, "What a woman!" I really don't feel qualified to make a recommendation specific to your case. I would, however, advise you that there are some very knowledgeable people at VR.com and that any comments or suggestions they may make are worthy of your attention. For someone like me who had an AVR w/ mechanical with no complicating features, I think there are many, not only qualified, but exceptional surgeons to choose from across the country. For someone with your particular history, I would invest a good bit of time and effort into ferreting out the best surgeon in the country particular to your case. You're future health and heart function deserves the very best care you can find. I tip my hat to you, Daf and hope you'll stay connected with us here so we can support both you and your mom! My best, Sue

 

[Daffodil82]

Thanks...

Thanks...

Sue...Thanks for the kind words and the advice. I would say my family is pretty fond of Dr. Pacifico, but I have continued my research no doubt. I have been having a ROUGH week and have missed work due to the symtoms of CHF creeping up on me. None the less, this website and forum has been a heaven sent. It's always great to know I'm not alone. :-D

 

[dawnwit15]

Check him out

Check him out

I'm sorry I'm posting this so late, I just saw your thread. Your so young and have been through enough already. I'm 29 and had a valvuloplasty last year and valve repair this year, 7 weeks ago.
If you haven't yet made a decision on a surgeon, please give Dr. Mehmet Oz a call at New York Presbyterian Hospital. He is the director of cardiothoracic surgery and is one of the BEST. He is world renowned and has even performed OHS on the president of Turkey and Joe Torre's brother (NY Yankees). He has been featured in People, Goodhouskeeping and the Top Docs magazines. Dr. Oz performs over 400 OHS per year with a fantastic record. Please check him out, you won't be disappointed.
Best of luck to you in your decision making. Feel free to PM if you need telephone numbers for Dr. Oz.
dawnwit15

 

[John & Joann]

We HIGHLY recommend Dr. Gustav Pettersson at CCF. He has done more open heart surgery than any other physician in Scandanivia. He does HIGH RISK, can communicate with his patients, and is a very nice man. He was recruited by Cleveland Clinic to help train new surgeons.

Happy Clicking for 33 years! Florida Snowbirds, but Buckeye by birth and choice.

 

[medtronic of borg]

recommendation

recommendation

I would recomend the place I have been seen my whole life. They have performed 15 of my 17 heart surgeries. Try Dr. Weintraub at the University of Iowa in Iowa City, Iowa. Just go to google and punch in University of Iowa Hospitals and Clinic.

Second recomendation is the Mayo clinic in Rochester , MN.

Medtronic of Borg aka Med

 

[Harpoon]

Daffodil:

Do you have a congenital heard defect?

if you do (which I suspect based on your age and the number of surgeries you've already had) then there is only one place to be.

Cleveland Clinic's Children's Hospital is arguably THE best place to be for people with congenital heart defects.

It's a very thorough department that handles the worst of the worst cases and has outcomes far superior to any other hospital in the US, if not the world.

The only reason their "stats" don't reflect that is because of the way statistics are collected and based, it's a flawed system.


If you have the time, get "Walk On Water" by Michael Ruhlman, very good book that takes some time to explain why statistics for hospital success are flawed....


Plus it's about Dr. Mee of the Cleveland Clinic, my surgeon. =)

 

[atlantadoug]

Daf, After 3 Aortic valve replacements, I would be grateful for the opportunity to speak with you live. At age 53 I had my AVR done May 11, 2011, (due to severe stenosis) done at the Cleveland clinic, by Dr. Lars's Svennson. M dieased valve was replaced with a Pericardial Bovine Tissue Valve, Model 2700 23MM. My surgery was successful and the care I received while at Cleveland Clinic was "top notch"! I was living in the Atlanta area at the time and chose CC because I wanted the "best of the best". My proceeding months of cardiac rehab and follow up with my cardiologist at St Joesph hospital in Atlanta was positive with good results. I moved to Texas in early September and had my first follow up visit with my new cardiologist with Forth Worth Heat, in November. A routine echo-cardiogram showed some alarming results with my new valve now in a moderate to severe stenotic condition already only 7 months aftyer replacement surgery at CC. Needles to say I was shocked and very concerned! I sent the Texas echo results to CC and asked for review as I am not a wealthy man and cannot afford to travel to Cleveland from Texas on for what may be routine testing. The staff at CC findings confirmed a moderate to server narrowing of my new valve based on the Echo film and report from my Doc in Texas. Both Texas and CC suggest I have another TEE which d provide a clearer "look" at my valves. They both say it is highly for this this new steosis, and could not understand why this would be happening so soon? CC is the premiere cardiovascular facility in the world is it not? Why should this occur within such a short time after my AVR surgery. I am concerned and confused. I could have the TEE done here in Texas without the expense of travel but given this unusual developments, I am inclined to travel to Cleveland for this test and their one on one analysis. I would enjoy speaking with you personally, and or others that may shed some light about your experience if you would be so kind. My email is [email protected]. Thank you and God Bless you all!

 

[jdlouth]

Daf,
I to was born with major heart issues and underwent open heart surgery at three months of age to repair coarctation of the aorta amongst other issues. My mitrial valve was also an issue but not severe. Until this year. My cardiologist sent me to three others for second and third opinions. All looked at my echos, tees, and other varying tests and all ahreeded that dr Lamelas at mt. Siani in Miami or Mayo was the way to go. Dr Lamelas has done ove 8,000 OHS and specializes in Miniumally invasive aortic and mitrial valve surgeries. Yes even this method can have increased recovery when it's your second or forth time but no broken sternum is what sold me. Along with his track record and survival rates. You may want to ask you cardiologist his opinion on this type of replacement as it involves less risk but a very experienced surgeon.

Whatever your decision I wish you a speedy recovery.