pulmonary valve surgery

[Sharlea]

Does anyone have any experience with pulmonary valve replacement? My daughter-in-law is facing this surgery. She is being told that they can only do it as OHS. Does anyone know of any drs. in the San Francisco area that does this surgery?

 

[Debbrn]

i just had my second PVR 5/20 at boston children's via open heart surgery. Do you know why she needs a new pulmonary valve? Has she had heart surgery before? Usually there is a congenital heart defect. If so she definitely needs to be seen by an adult congenital heart specialist. Replacing the pulmonary valve is not as common as the other valves. Make sure that the hospital and surgeon have plenty of experience specifically with the pulmonary valve. Boston children's did 80 last year. They are currently doing some people in the cath lab on limited experimental basis at three hospitals. One of which is Boston children's. Lyn will come on and she knows the other hospitals. UCLA has an adult congenital heart clinic and Dr. Childs is the medical director. I do not know the specific surgeon, but you can be referred via the cardiac clinic. Any other questions just ask.

Debbie

 

[Luana]

I would think there would be a number of very good surgeons in the San Francisco area, or maybe you might want to consider Stanford. A few people here have had VR at Stanford, though I think they were both aortic.

 

[Lynlw]

I mainly have the same questions as Debbie, has she had surgery for her pulmonary valve before?, since most adults that need replacement are because of CHD and usually had some surgeries as a child. Also as Debbie mentioned, pulmonary valves get replaced much less than other valves and the doctors with the most experience are CHD surgeons. Percutaneous Valve replacements for the pulmonary valve are approved by the FDA, but one of the criteria as far as I know is you already neeeded to have your pulm valve replaced before.

 

[Sharlea]

Thanks to all, to answer your ?'s. Yes, she had heart surgery at 2 y/o. She was born with tetrology of fallot. She also has pulmonary stenosis. She is seeing an adult congenital heart specialist. He has recommended one surgeon to her. She does plan on getting a second opinion.

 

[Lynlw]

I'm glad to hear that. BTW TOF is one of the CHDs that the Melody valve (percutaneous pulmonary valve) was made for. Does she go to a Adult w/ CHD Cardiologist or at least a CHD card?
Do you know who was recomended?

 

[Diane]

Sharlea,
I also have Tetrology of Fallot. I am glad your daughter in law is seeing an adult congenital specialist.....it is very important. I go to the ACHD clinic at Stanford. I had my pulmonary valve replaced about 5 1/2 years ago at Stanford University by Dr. Frank Hanley. They originally looked into doing my valve replacement percutaneously but my opening was too large. From what I have read, the largest valve they can currently insert percutaneously is 22mm. My opening required a 31mm valve. I can tell you that I got great care at Stanford when I had my surgery and I really liked Dr. Hanley. It is my understanding that he is one of the best adult CHD surgeons in the country. Your daughter in law might also be interested in the Adult Congenital Heart Association. She can check them out at www.achaheart.org. There are many tetrology patients there and having to have the pulmonary valve replaced is very common.

~Diane

 

[Debbrn]

I also have TOF. I am 44 and work full time with a little trouble. Other centers that have a large adult congenital heart program are UCLA, Mayo clinic in Minnasota, and Boston Children's. There are other centers also. Timing of the pulmonary valve replacement in tetralogy patients is very controversial. It depends on the size of the right ventricle, exercise tolerance, EKG findings and how the current valve is functioning. Different doctors use different criteria.

Debbie

 

[vtbecca]

My son has had his pulmonary valve replaced. He has truncus, which is similar to TOF. One of the girls in my truncus group just had the transcatheter valve done in Denver (she was the first at Denver Childrens. I understand there are teams from Boston and a few other hospitals going around and training docs at other hospitals. There are pretty specific criteria for the cath valve. The opening has to be a certain size and I think build up of calcium and scar tissue in the current valve can make it tricky. My guess is that it will be much more common in a few years. Those who need valves through open heart now will have the surgery done in a way to make the transcatheter valve a more viable option. I know of some truncus kids who had conduits replaced in the past few years with the catheter valve replacement in mind. The surgeons knew it was coming so they planned for it. So while she need OHS now in the future if it wears out they will hopefully be able to do it through cath. We are in the same boat. Our son will need a conduit and valve next time. Conduit will probably always be OH, but I'm hoping they'll set it up for a cath replacement later on! Best of luck to your Daughter in Law!

Becca