How to find a surgeon?

[a_dalhouse]

Hi again! I posted a couple of weeks ago to see if I could get recc's for a da Vinci surgeon for a mitral valve repair. And my search is still not going well. (recap: I'm a 45 year old mother of 2 girls ages 8 and 6, and feel the need to be back on my feet as quick as possible - and to stay alive for them!). I'm not as set now on da Vinci in particular, as I am in just some sort of minimally invasive (thoracotomy, mini-thoracotomy?) surgery. I haven't found anyone who can give me a personal recommendation in one of the cities I'm looking in - Austin (where i live), San Antonio or Houston. So I've been googling these cities with minimally invasive cardiac surgery. While I've found a few names that way, it feels so strange to pick a surgeon like that - like I don't really know that much about them. They usually come with a few ratings on Vitals or Healthgrades, but not enough to give me confidence in choosing.

I had a consult with a very respected cardiac surgeon in Austin this morning, but he mainly does sternotomies and does not have a very high opinion of minimally invasive. But then again, that is not his specialty. And he gave me the figures of mortality rates and rates of AFib after surgery and chances for the need of a second surgery and I feel my anxiety is at an all time high now (any recommendations for remaining at ease throughout this whole thing are VERY welcome!). I just know that I should be able to find a good minimally invasive surgeon at least in Houston, but hopefully San Antonio. But the search is daunting.

Does anyone have any recommendations on how to go about choosing a surgeon. I thought somehow it would be easier than this. I feel now that I might spend a year looking for the right surgeon in Tx and then wind up in Cleveland anyway. Am I just being too picky? My requirements now are for them to have been doing this surgery at least 10 years and doing at least 50 a year. Or something in that range. I want someone highly experienced with great success rates. Is it just too soon to expect anyone to have that much experience with minimally invasive?

Sorry for the rambling.....I'm just feeling quite frustrated and anxious at night when I'm trying to go to sleep of course!
Thanks for any help!!!
Andrea

 

[ejc61]

Hello Andrea,

The thing I found is that surgeons are comfortable with what they do well. There's nothing wrong with that. I also noticed surgeons and cardiologists talk unfavorably about procedures they do not do. I don't have an answer. They really haven't been doing robotics consistently for 10 years. They haven't been doing right mini-thoracotomies much longer. I would say that I would need a very good reason to have a sternotomy. I know this board is predominantly aortic valve driven and therefore have more knowledge discussing sternotomies. Mitral valves are different and have different options. In my case, if I didn't notice that I had a world renown robotic surgeon in my city, I would have stayed with the right mini-thoracotomy. One minor difference between a right thoracotomy and robotic is that the right thoracotomy may have to spread the ribs a bit more than the robotic. Personally, I would rather them tamper with a right side rib than sawing my chest with a sternotomy.

 

[tom in MO]

I would suggest not first looking for a surgeon, but look first for the hospital. It takes a team to do the work. Find a hospital that does what you want, then look at their staff.

In my case, there are two big heart hospitals in town and some little ones. I looked into the two big ones and chose the one that I believe is better. I had two other surgeries and two kids in the hospital I chose, so I knew their level of care. The other hospital had some serious past problems with their cardiac program, so even though they are now good, there was no reason to go there, services were equivalent for what I wanted.

My surgeon was chosen by lottery, he was the next in line on the list when my cardiologist called. I investigated him and found not much other than his research and publications. However, the research was good and current. This plus the interview with him was enough for me. You may not be able to find out more.

One thing I found that helped me handle the stress is to try to not mircromanage too many details. In the end, you give yourself up to the "system" and come out the other end. You will get some milestones, picking the hospital, then picking the surgeon, and after that it's waiting until the pre-op stuff.

Keep yourself busy with things to get ready. Have the colonoscopy, teeth cleaning, etc. you've been putting off. Make sure your car's routine maintenance is up to date. Clean out your convelescence area, make some meals for when you won't want to cook, scrub the floor before you can't, etc.

 

[ejc61]

I agree with Tom as far as choosing a hospital. My initial choice was at my "home" hospital. When I changed my mind as to the surgeon, it went with a change to a hospital down the block which was ok since it was probably better for cardiac anyway. There are also new cardiac programs that are sprouting up, in the Atlanta area at least, where some of the well known local cardiac surgeons from the more established local hospital programs go to start up a new hospital program. I'm concerned that the hospital support may be a bit behind the learning curve.

 

[scott.eitman]

I suggest calling the big hospitals in those cities. You also may have better luck just calling it robotic mitral valve surgery.

Stay well
Scott

 

[AZ Don]

Hi,
When I look for a Dr, I go to US News, Top Doctors. You can do the same for Hospitals. If you look first for Hospitals as previously recommended, then you can drill down to look for cardio thoracic surgeons that are also highly ranked. From this smaller list, then you can look up the Bio's of the specific Dr's, or just call their office and ask their staff about their experience with Da Vinci or other less invasive surgery's. If none of the top Dr's perform minimally invasive surgery, then you may want to discuss with one of them, why they don't. Minimally invasive certainly has advantages but there could be drawbacks as well.

 

[jhc1]

Andrea, I live in Houston, and am facing aortic valve replacement myself...both Methodist Hospital and St Luke's rate highly in the US News National Rankings for cardiology. When my "turn in the barrel" comes, I've elected to go to St Luke's, in part due to info I've found on these forums, and in part due to experiences some of my neighbors and colleagues have had. The also list areas of specialization for their surgeons, which might help you decide on a surgeon. Good luck!

 

[a_dalhouse]

THANKS everyone!! All so helpful to hear! I actually was looking at hospital ratings in the middle of the night last night and the one I'm looking at at the moment has only a "C" rating. Though St. Lukes in Houston, a highly regarded hospital for cardiac procedures, did not seem to rank much better. But that was just one site. I will try US News next.

And Tom I totally agree. The more I look at the details and statistics the scarier it gets. I know I have to do this so I guess my job is to find a place and a surgeon I trust and then let go. Gonna work on that!! Very good advice!

If anyone knows of other ratings for hospitals that I can access, please bring it on
thanks so much for the support!
Andrea

 

[a_dalhouse]

And ejc61, you are talking me into looking in Atlanta! I actually have relatives there, so not totally out of the question. Just need to exhaust my choices in TX first. It's good to hear from someone who's had robotics though. It's not as popular as I thought it would be somehow.
-Andrea

 

[ejc61]

Hello Andrea,
At a cost of $2 million per robotic machine, it's hard for the hospital to recoup their investment. And surgeons have to learn to do something a new way. This is why it's difficult to apply the technology. But if you just have a bad mitral valve and no other problems, it's great. To make you feel better, maybe?, I switched surgeons 2 days before my day. There's a decision making process for sure, but it's less scary than it appears looking back. Also, I'm not the biggest fan of US News and World Report Rankings. Mine wasn't even listed and it's specialty is cardiac. Moreover, a hospital that just started doing cardiac surgery got the "best " honors. I'm just saying...

 

[a_dalhouse]

Thanks jhci! When I have time tomorrow I am going to take a good hard look at St. Lukes. It seems to be the one that keeps popping up.
a.

 

[epstns]

I guess the process was a little different for me. By the time I was ready for surgery, I had a very comfortable long-standing relationship with my cardio. I asked him where I should consider for surgery. He said "Well, you're not going to do it here (our local hospital, fairly highly ranked by US News). I suggest that you look into hosiptal A and B, and meet these surgeons at those hospitals." Basically, he recommended two other, more highly regarded hospitals, and referred me to top-ranked surgeons at each. No matter which doctor I chose at either hospital, I would do fine. I ended up choosing the top ranked surgeon, since both hospitals seemed to have top-grade care and care teams.

 

[jhc1]

Andrea, I believe you'll find St Luke's listed as #5 in the country for cardiac care...one question I asked my cardiologist was "who would you go to, if you were me?" I later found out he had referred 5 family members to a given surgeon...

joe

 

[Gail in Ca]

How about CA? I can only suggest Dr Craig Miller at Stanford. He suggested that I would've had a minimally invasive MV repair a few yrs ago, if that's all I needed. We both assumed I wouldn't need a new aortic valve as mine was mechanical. He had said he would go in thru the rib.
Not sure if that's robotic or not. But, he seemed pretty confident about that procedure at that time. Anyway, I couldn't have it as I got endocarditis and had to have my aortic valve replaced (along with ascending graft), so I still haven't experienced that procedure.
Also, I would say that you should ask your cardio who he would use for himself or family members. I asked mine, and he suggested Dr Miller, and my sister's friend, a cardio in So Cal, recommended him, too, and my former cardio also said he was the best. That was a big factor in my choosing him, as well as when I met him, he just exudes confidence, and tells it like it is. So, look for that.
I heard somewhere that Stanford doesn't rate super high, but I would say that they take very serious cases there, as the nurses told me, when others are told something can't be done, the patient goes to Stanford and Dr Miller tries anyway, and has very good success. People go to him from all over the world.

 

[tom in MO]

I'm not the biggest fan of US News and World Report Rankings either. My hospital also wasn't even listed and it has the newest facility in town. The hospital in town that was listed is the one with the most advertising. Up until 10 years ago, the listed heart hospital had some severe problems, including fraudulently taking transplant patients w/o a transplant program. The listed hospital rebuilt their cardiac program by luring doctors from the other hospital. Don't forget, the US News and Word Report rankings are there primarily to sell advertising.

I like hospitals that are not-for-profit . I hope that at their core, they may be a little bit more morally centered. They are getting hard to find these days. In my city, the catholic church just pulled out, all that is left is one lutheran hospital, one city hospital and one state medical center.

 

[Mom2izzy]

How to find a surgeon?

I had a mitral valve repair done by the surgeon who wrote the text book "mitral valve repair". He was not a fan of robotics because he feels that being able to touch and feel the repair is critical. He also gave me some stats about how many repairs he had to re-repair after robot surgery. He gave me the option of mini-stern or mini-thoracotomy, but said there is really no such thing as "minimally invasive" open heart surgery. It is MAJOR surgery no matter how they get in there. I chose mini-sternotomy...I am a sissy and don't tolerate pain meds well and although sawing through bone may sound rough, it seems that cutting through the muscle that stretch every time you breathe to get between your ribs can be worse. My chest really never gave me any pain. After 3 days, I never took anything stronger than Tylenol. My worst pain was in my back and neck muscles. This got better the more I was able to be up walking around. I also had several massages (one in the hospital) that helped a bunch.

I guess the main point here is that even the option that sounds the WORST isn't horrible. I would say pain-wise that my recovery was no more traumatic than my C-section.

Sorry I can't help with area surgeons...I'm way up north in Michigan. My cardiologist was able to recommend a good one for me.

 

[a_dalhouse]

Thanks again everyone! Just "hearing" voices out there that have been through this is so very helpful!
I thought I would update on my search...
I spoke with a surgeon at St. Lukes in Houston this morning (he's actually in NY right now and called me to answer my questions!). His name is Todd Rosengart and one of his specialties is minimally invasive surgery - he has done a lot of research on it as well. From what I told him he thinks I have a 90% chance of having a repair through a mini-thoracotamy. He also doesn't recommend robotic as it is a longer surgery and doesn't seem more advantageous at this point than the thoracotomy. He seems really experienced and up beat and I just have a good feeling about him. He's also been voted one of the top doctors in the country 5 times in the last decade. I'm planning an office visit soon and hope this will end my search and will hopefully schedule surgery in the latter part of June. I am really anxious to get this over with to say the least!

Thanks again for all of the very helpful responses. I am feeling hopeful!
Andrea

 

[ejc61]

Hello Andrea,

That's sounds good. The odds your surgeon gave for repair is similar to what I was told by both surgeons I spoke with so I think that's looking good. I'm glad you weren't given the sternotomy option. That is such a pain in the *** from an infection standpoint and the bone recovery standpoint. They will also probably make you go through a heart cath procedure and a CT scan to check your overall system pretty soon. Also, during the conversation with him, a Plan B will most likely be discussed in case the repair can't be done. This is pretty standard so don't be alarmed.

 

[Bryan B]

First I researched who were the best surgeons for the type of surgery I needed. Then I narrowed it down by their location. Luckily I live 30 minutes from Duke Medical Center which is #7 on the US News & World Report rankings for heart hospitals. It has been in their top 10 for years and even without their rankings has been nationally regarded as one of the best hospitals in the nation for as long as I can remember. If Duke wasn't here I probably would have gone to Wake Forest Baptist Hospital in Winston-Salem in order to have Neal Kon as my surgeon. For my 2nd surgery I almost went to Mount Sinai hospital in NY specifically to have Paul Stelzer as my surgeon. I was hoping to have a valve sparing aortic root repair but it turned out that my ascending aorta was also in bad shape so the valve needed to be replaced. There was/is a surgeon at Duke that specializes in surgery of the aorta so I stuck with Duke. So I guess what I'm trying to say is my top priority was finding the best surgeon(s) for the surgery I needed and then find the closest one to me. BTW almost all of them happened to be at large teaching hospitals.

 

[dornole]

I would like to revive this with a specific question - what are the reliable data sources to find surgeons' specific kinds of valve repair and/or replacement experience, and their success rates? (U.S.)

I know I can get some things from clinic websites, but I was hoping for something less marketing-oriented.

Seems like the world-famous Mayo Clinic in Rochester MN (only 90 minutes from home) or Cleveland Clinic are mitral valve repair centers, but I'd like data to back up impressions and of course to pick a specific surgeon. I thought someone said something about a paid data ranking service in something I read? But I can't find it.

I'll be asking my cardiologist as well when I see him in Jan. - just thinking it might be smart to put a short list of prospective surgeons together to avoid a panicked search later.

Thanks!