Dr. and Hospital Selection

[Guest]

My daughter (28) needs a PVR. Her OHS that included the valvectomy was at age 4. At the time, we lived in a more rural area. I sought several opinions and traveled cross country for the surgery. She is adult now and will make her own choices but has asked for my assistanceas she moves forward. In just the last few weeks we have learned of this site, and just how many VR procedures occur. Is there a good way to rate surgeons? As in any other field....not everyone has the same skill and successes in their chosen professions. First consult with local surgeon referred by cardiologist on 11/18. Decisions can be difficult and we will want them to be as informed as possible. Lots to learn. Thanks

 

[Debbrn]

I was born with tetralogy of fallot that includes pulmonary valve stenosis. I am 48. I have had 2 PVR. My last PVR was 3 years ago. I had mine at boston Children's hospital. Mayo (Minnesota) and UCLA , and Philadelphia also have a large center just to name a few. A good place to check is achaheart.org. They have a clinic directory that gives information on many of the centers in the US. PVR replacements are not as common as the other valves. The questions I asked was how many PVRs each surgeon had done. Also the age spread of the patients that they take care of. At the time of my PVR Boston Children's had done about 80 PVRs/year versus 15-20 where I live. My last surgery was on a thursday and was discharged the next tuesday. It was not that bad.

Debbie

 

[tom in MO]

Is there a good way to rate surgeons? No. Some here like US News and World Report ratings, but for the two major hospitals in my area, they are dead wrong.

Two years ago I tried to find information about the surgeon assigned to me (he was mine because he was next in the line at the hospital I chose.) I could find only about 5 comments, one sounded like sour grapes from a family whose elderly patient died. I did find his biography, and that was good. He was a leader in clinical trials for valve related surgeries. He was an MD and a chemist (good combo in my book.) He had been at the same hospital for 20 years (i.e. helped build their successful program.) I searched both states where he practiced official malpractice sites. I asked my cardio about him, and he didn't know much, but knew that there were no "problems" and he would use him if it was my cardio's valve.

When I talked to the surgeon I asked about his failure rate, he laughed and said he does not know it. The last patient he had a problem with was a year ago and he does about 200 surgeries a year. The patient was over 90 yo and it was the complications, not so much the surgery.

 

[Guest]

Debbrn and tom in MD

I appreciate both of your responses. I have been reviewing the achaheart.org site it looks like a viable way to select a city/hospital to travel to. Lots of considerations when traveling away from home for treatment and for surgery. Until our fisrst meeting with the first surgeon next week I will not have an idea whether he has performed 2 or 200 (in a career) but I am guessing it is closer to 2 than 200. Have to start somewhere because I can't find data on them otherwise. Thanks again

 

[scott.eitman]

Due to the surgery at age 4, I would think you need to find a surgeon that is familiar with redo operations in general and with the procedure that was done previously.

Last night at our Mended Hearts program, the Cardio that talked with us pointed out how specialized Cardios are. For example, his speciality is valves and the aorta whereas others may specialise in afib. I would want a surgeon who as experience in your daughters special need.

You may want to get in contact someone with Mended Little Hearts as well. There are many parents in their groups who have most likely dealt with similar needs.

 

[clawie1]

Hi Vegas Dad,

I had an AVR done July 22, 2013 at Keck Hospital, LA. I posted previously about how an emergency forced me into surgery after 14 years of being in the waiting room. My cardio referred me to Keck because of their innovative approach to valve surgery. My surgeon Dr. Cunningham was wonderful and so was the staff. I couldn't believe how I lucked out because I was considering going out of town for the surgery. Dr. Vaughn A. Starnes, is a professor and chair of the Department of Cardiothoracic Surgery at the Keck School of Medicine of USC and well known around the world. I am providing a link for you below. I wish you all the best for your family. Nita

http://www.surgery.usc.edu/cvti/cardiac-transfusionfree-complexheartsurgeries.html

 

[clawie1]

Hi Vegas Dad,
I forgot to mention that my whole wing consisted of people like me who will undergo or had heart surgery. I met a couple of people who were referred here for second surgeries because their surgeons lacked the expertise. I also remembered talking to my surgeon who indicated there are some doctors who practice in LV but had their training at USC. Nita

 

[scott.eitman]

Hi Vegas Dad,
I forgot to mention that my whole wing consisted of people like me who will undergo or had heart surgery. I met a couple of people who were referred here for second surgeries because their surgeons lacked the expertise. I also remembered talking to my surgeon who indicated there are some doctors who practice in LV but had their training at USC. Nita

Great point. I think it is good to go to a wing of heart patients. It is very comforting when the entire team is familiar with the specific things to expect to be seen during a patients recovery.

 

[clawie1]

Hi Vegas Dad,

Let me refine this...we were all valve patients.

 

[Guest]

Many thanks to all that posted on this thread. I followed up on every name, link and suggestion. Ultimately it was my daughter's descision but I am happy that it was informed, in part by what we learned on this and other sites/blogs. I am confident in her decision and in her surgeon. She has chosen an experienced and respected surgeon locally. She is now scheduled for a homograph PVR on Jan 9. Gives time to enjoy the holidays
and make all the necessary plans.