Recommendations for surgeons at Cleveland Clinic?

[MS2]

Hello everyone,

I am new here. I am 26 years old, and never knew I had a murmur (let alone a BAV) until I had my physical 1.5 years ago before entering medical school. My doctor ordered an echo, which revealed a mild-moderate aortic regurgitation, along with mild regurg at the other valves as well. Fast forward one year to this last summer, and my echo came back showing moderate-severe aortic regurgitation. My cardiologist ordered a MRI/MRA which revealed a bicuspid aortic valve, with the aortic root at 3.8cm, no left ventricle hypertrophy, etc. So this seems to be an isolated issue of having a BAV. My cardio is recommending that I get this take care of sooner than later, even though I am asymptomatic so that I do not develop any other complications due to the BAV.

My question is...for those who have gone to cleveland clinic, or have friends/loved ones who have gone to cleveland clinic for aortic valve replacement, how was your experience there? who was your surgeon and would you recommend them? I am calling Cleveland Clinic today to request a consultation and if possible, would like to have an idea of other's experiences with the surgeons there so that I can try to request specific surgeons.

Thanks for your help, and all the information/support that everyone here provides to others. I have been looking at these forums for months, and find comfort in reading others experiences/support for others.

Nick

 

[tprice54]

Nick, I just had a tour of CC last week, as us cardiac athletes gathered for a race in Akron. When you visit I am sure you will be impressed by the building, staff, layout, etc. I did not use Clevevland Clinic, had mine done locally, but was very impressed with everyone we talked to, and would definetly consider a reop there. I am sure others will chime in with specific doctors, but overall, the place is pretty amazing.

 

[scott.eitman]

Deep breath...this is not something to just rush into.

I recommend everyone at the Clinic. Not knowing anything about our Cardio, I recommend getting to a really good one...or at least getting a second opinion. Prior to my 1st, my Cardio told me that I did not need surgery and I was pretty asymptomatic. He was wrong as my symptom was just being tired. All other Cardios knew that I needed surgery. I recommend the 2nd opinion because you may find others say you do not need surgery yet
It is my belief that you should make an appointment with a Cardio there and let them guide you to the best surgeon for you needs. Not all cardios are the same in that they all can probably do everything, but they typically specialize in something. When I made my 1st appointment in 1998, the scheduler asked why I and redirected me to a different Cardio who knew more about Aortic Valves. Similarly, the Surgeons have specialties as well.

I believe that you will find that the Cardios at the CCF have a confidence that comes from a heck of a lot of experience.

I have meet with many patients who have had miraculous repairs done to their bodies from many different surgeons. These guys know how to fix hearts. I am not saying that every outcome is perfect, but that not much is beyond their abilities.

Scott

 

[RobThatsMe]

Hi Nick,

I agree with what Scott said. He had his surgery about 2 1/2 months before mine.
I had a very complex surgery and had 2 surgeons working on me there.
They are amazingly talented at CCF, and these surgeons have had just about every kind of heart related surgical issue thrown at them.
They have seen it all.

CCF is truly the benchmark hospital in America regarding heart related surgeries. My care, both pre and post surgery was fantastic.

Rob

 

[Bill B]

Although the CCF undoubtedly earned its top ranking in OHS, unless I had family in Cleveland or nearby, I'd sure take a close look at a facility and surgeon close to home as well, if Ft. Lauderdale is that. I found a surgeon 30 miles from home that is right up there with the CCF staff, with credentials and experience very, very few OHS specialists in the world have. That said, a consultation with Pettersson, Svensson or any of the dozen or so valve surgeons there would be enlightening.

 

[Lynlw]

Although the CCF undoubtedly earned its top ranking in OHS, unless I had family in Cleveland or nearby, I'd sure take a close look at a facility and surgeon close to home as well, if Ft. Lauderdale is that. I found a surgeon 30 miles from home that is right up there with the CCF staff, with credentials and experience very, very few OHS specialists in the world have. That said, a consultation with Pettersson, Svensson or any of the dozen or so valve surgeons there would be enlightening.

I know this doesn't apply to MS2, since he just found out about his BAV and didn't have surgeries a a child, but this looked like a great thread to mention altho CCF is Ranked the best for Adults, - Aorta's valves etc. IF you are an Adult with complex CHDs (Congenital heart Defect) who had surgeries as a baby / child or the parent of a child needing heart surgery, there are quite a few centers in the US that are ranked higher and have much more experience and better results than CCF. Actually CCF is usually ranked in the 20s for Childen's Heart hospitals. (this year 28).

The reason I mention this is I know of a few children and adults with Complex CHD, who went to CCF thinking it is the best for ALL heart surgeries and either had terrible times or didn't make it. Would they have survived at the leading CHD centers? It's impossible to know, but like CCF for Adults and aquired heart problems, you have much better chances with the Surgeons* and hospitals who do the very complex multiple REDO Congenital surgeries daily if not a couple times a day.

This is nothing against the doctors at CCF, it is mainly because Congenital Heart surgeons, have to do a few more years of training (fellowship) on top of the many years required to be a Heart(CT) Surgeon. To be a heart surgeon it is already a pretty long training path compared to many doctors, since (the vast majority if not all) they do the general surgery program, before they start CT, then after completing their CT program go on to CHD surgery felowships for a couple years. When they finally are done training, many stay or go to some of the leading, bigger CHD centers and assist the experienced surgeons for a few years until they really become experienced a all the different CHD surgeries. So after all that much training, they tend to go to centers that specialize in CHD /adults with surgeries. Often in Childrens hospitals.

"Thoracic surgeons have to graduate from medical school and most commonly will go on to complete a five-year general surgery residency. After this they must successfully matriculate through an approved cardiothoracic surgery residency program for either two or three years. Some thoracic surgeons choose to do additional training in a sub-specialized area but this training is largely optional, except for congenital heart surgery http://www.sts.org/patient-information/what-thoracic-surgeon

 

[MS2]

Thanks for the replies everyone. I have made an appt with Dr. Leonard Rodriguez at CCF for November 3rd. After looking at my schedule, I may try and reschedule it to closer date, so that if they do recommend surgery, I can try to schedule it for the month of December. I have the whole month of December off from school, and school is willing to give me an additional 6 weeks off to recover from surgery, so that would be the best time for initial recovery.

 

[joanie]

I'm glad you have an appointment at CCF. It's a remarkable place. I had my aortic valve replaced there in May 2010 and I couldn't have asked for better care. I flew from South Carolina and the travel there and back was not a problem. If ever I need additional surgery, I'm heading right back there.

As for a surgeon, I concur that any of the surgeons there will be great. After you see Dr. Rodriguez, he'll point you in the right direction.

Good luck!

 

[CadenJohn]

I know this doesn't apply to MS2, since he just found out about his BAV and didn't have surgeries a a child, but this looked like a great thread to mention altho CCF is Ranked the best for Adults, - Aorta's valves etc. IF you are an Adult with complex CHDs (Congenital heart Defect) who had surgeries as a baby / child or the parent of a child needing heart surgery, there are quite a few centers in the US that are ranked higher and have much more experience and better results than CCF. Actually CCF is usually ranked in the 20s for Childen's Heart hospitals. (this year 28).

The reason I mention this is I know of a few children and adults with Complex CHD, who went to CCF thinking it is the best for ALL heart surgeries and either had terrible times or didn't make it. Would they have survived at the leading CHD centers? It's impossible to know, but like CCF for Adults and aquired heart problems, you have much better chances with the Surgeons* and hospitals who do the very complex multiple REDO Congenital surgeries daily if not a couple times a day.

This is nothing against the doctors at CCF, it is mainly because Congenital Heart surgeons, have to do a few more years of training (fellowship) on top of the many years required to be a Heart(CT) Surgeon. To be a heart surgeon it is already a pretty long training path compared to many doctors, since (the vast majority if not all) they do the general surgery program, before they start CT, then after completing their CT program go on to CHD surgery felowships for a couple years. When they finally are done training, many stay or go to some of the leading, bigger CHD centers and assist the experienced surgeons for a few years until they really become experienced a all the different CHD surgeries. So after all that much training, they tend to go to centers that specialize in CHD /adults with surgeries. Often in Childrens hospitals.

"Thoracic surgeons have to graduate from medical school and most commonly will go on to complete a five-year general surgery residency. After this they must successfully matriculate through an approved cardiothoracic surgery residency program for either two or three years. Some thoracic surgeons choose to do additional training in a sub-specialized area but this training is largely optional, except for congenital heart surgery http://www.sts.org/patient-information/what-thoracic-surgeon

Where do you find rankings of centers ranked higher than CCF for Adults with CHDs? I had OHS when I was 5 to repair a bi-cuspid aortic valve. Now I am 38 and needing a replacement. I was thinking strongly CCF (also considered Hopkins), but would love to hear where you think I may get better results.

 

[Lynlw]

Where do you find rankings of centers ranked higher than CCF for Adults with CHDs? I had OHS when I was 5 to repair a bi-cuspid aortic valve. Now I am 38 and needing a replacement. I was thinking strongly CCF (also considered Hopkins), but would love to hear where you think I may get better results.

Its a little tricky since Adults with CHD is a relatively new specialty, since unfortunately before their weren't alot of children born with some of the more complex CHDs that made it to adulthood. But for the most part the surgeons and staff who have the most experience best results with the complex CHD surgeries in adults are the surgeons who are the Children's heart surgeons also. For the most part they are in Childrens hospitals and sometime partner with "adult" hospitals for the adults with CHD center (like CHOP in Philly CHD doctors partner with Uof P's hospital (not otherwise related or owned by the same group) for their Adult CHD Center and in some places you can decide which hospital you rather have your surgery, no matter how old you are- others are more divided but same Surgeon's work in both hospitals)

The best ranking, IMO, for CHD centers/surgeries are the US news. Usually for CHD, Boston Childrens and CHOP are ranked 1-2 then the numbers drop http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery The different info and stats is good and I find the "Reputation with specialists" results pretty interesting,
"In each of the 10 specialties, RTI randomly selected 150 pediatric physicians credentialed in the specialty from a national database and sent them a survey that asked them to name the five best hospitals in their specialty for children with serious or difficult problems, without considering location or expense" for the 3 previous years combined.

The Adults with CHD org (which if you haven't found them they also have a great forumand are a very active ORG) has a list of all ACHD centers, it isn't ranked, but is a good place to see how busy they are, how many patients and surgeries they do a year ect. It is all based off surveys the hospitals fill out. http://www.achaheart.org/home/clinic-directory.aspx

Now with all of that said, For Aortic valve replacements, CCF is very good, but you probably could find somewhere closer that has more experience with complex CHDs and everything that can go along with them. Where do you go for you cardiology visits?

 

[pem]

Where do you find rankings of centers ranked higher than CCF for Adults with CHDs? I had OHS when I was 5 to repair a bi-cuspid aortic valve. Now I am 38 and needing a replacement. I was thinking strongly CCF (also considered Hopkins), but would love to hear where you think I may get better results.

This doesn't answer your question, but I have a data point that might be useful. I have congenital bicuspid aortic disease and because at one point I was considering the Ross procedure, I went to CCF to meet with Dr. Pettersson, who performs that procedure. Though I ultimately decided to have a straight valve replacement done locally (to stay close to family and because there is a great surgeon in my home town), I would not have hesitated to have Dr. Pettersson perform the procedure. In particular, I think he thrives on very complex cases (ask Rob), so would that be suited to your situation? I think Dr. Pettersson is close to retirement, so time may be of the essence in terms of his availability for surgery. Great bed-side manner by the way - and comes across as thoughtful, practical, and whole.

Best,
pem

 

[CadenJohn]

This doesn't answer your question, but I have a data point that might be useful. I have congenital bicuspid aortic disease and because at one point I was considering the Ross procedure, I went to CCF to meet with Dr. Pettersson, who performs that procedure. Though I ultimately decided to have a straight valve replacement done locally (to stay close to family and because there is a great surgeon in my home town), I would not have hesitated to have Dr. Pettersson perform the procedure. In particular, I think he thrives on very complex cases (ask Rob), so would that be suited to your situation? I think Dr. Pettersson is close to retirement, so time may be of the essence in terms of his availability for surgery. Great bed-side manner by the way - and comes across as thoughtful, practical, and whole.

Best,
pem

Ok, good to hear. Funny you mentioned, I was planning on having Dr. Pettersson do it. Mostly because of all the rave reviews on this board. I've been followed by Dr. Traill at Hopkins. He is really good too. I just seem to like CCF surgical results a little more than Hopkins.

Not sure that more complex than any other Aortic Valve replacement? I was told by Hopkins this is a pretty routine surgery.

 

[pem]

Not sure that more complex than any other Aortic Valve replacement? I was told by Hopkins this is a pretty routine surgery.

I have been cautioned by the group and my cardiologist to not overweigh small differences in hospital outcome statistics. ("There are lies, damn lies, and then there are statistics"). I think this is good advice. For me, post-surgical quality of care was a particularly important factor, but hard to measure in advance.