Help needed finding a heart surgeon -

[katerinasmom]

A good friend of mine is looking for a very specialized surgeon for her mother. I offered to post this referral request on this board in hopes of finding her some options. She lives in NY but is willing to travel to have this procedure done. Her own Cardiologist could not come up with the name of anyone who performs this specific procedure and seems to be taking forever in locating someone who does. Even the very good heart hospital near her doesn't seem to have anyone. Perhaps because most of these cases are treated in childhood and the patient in this case is in her late 50s early 60s? I don't know but here's how she describes it. Any recommendations would be appreciated. Please feel free to PM with any specific suggestions.

I am looking for recommendations for a good surgeon who specializes in, and has performed surgery to correct a “Coronary-Pulmonary Artery Fistula”. A Fistula in the heart is a rare abnormality in the heart usually present at birth and usually found in children but in this case it is in an Adult female in her early 60’s. It is a cyst in the heart which blocks the blood flow from one chamber to the other. We are looking for really good surgeons and it would be even better if they have done this treatment of plugging up the opening using the “Coil” procedure. From what I understand, the "coil" procedure is like a catheter sent to the heart instead of opening up her chest. Any help is appreciated.

[Nyfeara]

Have you tried Deborah Heart & Lung Center in NJ? DH had surgery there last year and we had an amazing experience there. I grew up not far from there in NJ, but we traveled from the Philly burbs to there for the surgery.

Please feel free to PM me for other details!

Good luck,
Karen

[k_null81]

I would check achaheart.org it's an organization for adults with congential heart defects. They may be able to point your friend in the right direction in finding a surgeon.

[lhafer]

I know it's not close, but you can look at St. Luke's Episcopal Hospital in Houston, Tx. We have the largest medical center in the world, and patients from all over the world come here for various medical treatments and procedures.

St. Luke's is known for their Heart Institute. It seems there are very very few cases of this done with older persons, as it's usually corrected in children. .

At least it gives them somewhere to start, and some names to go with.

http://www.stlukeshouston.com/

http://circ.ahajournals.org/content/97/20/2091.full

[westwoodmom04]

A good friend of mine is looking for a very specialized surgeon for her mother. I offered to post this referral request on this board in hopes of finding her some options. She lives in NY but is willing to travel to have this procedure done. Her own Cardiologist could not come up with the name of anyone who performs this specific procedure and seems to be taking forever in locating someone who does. Even the very good heart hospital near her doesn't seem to have anyone. Perhaps because most of these cases are treated in childhood and the patient in this case is in her late 50s early 60s? I don't know but here's how she describes it. Any recommendations would be appreciated. Please feel free to PM with any specific suggestions.

I am looking for recommendations for a good surgeon who specializes in, and has performed surgery to correct a “Coronary-Pulmonary Artery Fistula”. A Fistula in the heart is a rare abnormality in the heart usually present at birth and usually found in children but in this case it is in an Adult female in her early 60’s. It is a cyst in the heart which blocks the blood flow from one chamber to the other. We are looking for really good surgeons and it would be even better if they have done this treatment of plugging up the opening using the “Coil” procedure. From what I understand, the "coil" procedure is like a catheter sent to the heart instead of opening up her chest. Any help is appreciated.

There is a guy at Columbia Presbyterian in NYC who specializes in fixing genetic cardiac issues. Don't know his name but should be easy to figure out from their web site.

I'm sure your friend has already been told this, but surgeons won't always correct adult abnormalities depending on the cardiac strength of the patient. Hopefully, your friend's mother isn't in that category.

[hollybloom24]

I'd call both Brigham and Women's Hospital and Massachusetts General Hospital Cardiac Surgery departments and ask who on their staff would see such a patient.

[miki]

Have you tried the Cardiothoracic Surgery Dept. of the Heart Center at St. Francis Hospital in Roslyn, NY?

[TxCat]

I know it's not close, but you can look at St. Luke's Episcopal Hospital in Houston, Tx. We have the largest medical center in the world, and patients from all over the world come here for various medical treatments and procedures.

St. Luke's is known for their Heart Institute. It seems there are very very few cases of this done with older persons, as it's usually corrected in children. .

At least it gives them somewhere to start, and some names to go with.

http://www.stlukeshouston.com/

http://circ.ahajournals.org/content/97/20/2091.full

Yup, try the Texas Heart Institute at St. Luke's Episcopal Hospital. They see a fair share of adult age congenital heart patients. She may also want to go through a pediatric congenital heart program to get started (there is one at Texas Children's Hospital, next door to THI), and they can usually do a good job of referring an adult patient with a congenital heart condition to the proper center/surgeons.

[lhafer]

Yup, try the Texas Heart Institute at St. Luke's Episcopal Hospital. They see a fair share of adult age congenital heart patients. She may also want to go through a pediatric congenital heart program to get started (there is one at Texas Children's Hospital, next door to THI), and they can usually do a good job of referring an adult patient with a congenital heart condition to the proper center/surgeons.

Yep! As a nurse who worked at Texas Children's and did several rotations through St. Luke's during nursing school...both are fantastic institutions.

[Tondi G]

I think this may have been the surgery my neighbors DD had when she was 5. Her doctor is at UCLA medical Center here in Los Angeles.

[MelissaTC]

Duke - http://www.dukehealth.org/heart_center/programs/cardiovascular-genetics-services/treatments/

[katerinasmom]

Have you tried the Cardiothoracic Surgery Dept. of the Heart Center at St. Francis Hospital in Roslyn, NY?

Yes. They tried there first given its close proximity to home. No luck. But thanks for posting.

[katerinasmom]

Thank you all for responding. I will be passing along all of this info to my friend. Your help is always most appreciated.
Thanks again!

[GoBlue]

Cleveland Clinic, no question about it. And I am an intensive care MD.

[sntm]

Biggest priority is specific doc - look for one who Is fellowship trained and practices both pediatric and adult cardiac surgery for that type of issue in an adult

[A1icia]

Both Johns Hopkins in Baltimore MD and the Washington Hospital Center in DC have cardiologists who specialize in adults with congenital heart defects.

Dr. Duke Cameron at Hopkins to surgery on me five years ago to repair a heart defect I was born with. He is amazing.

[jent]

I'd call both Brigham and Women's Hospital and Massachusetts General Hospital Cardiac Surgery departments and ask who on their staff would see such a patient.

Brigham & Women's has a program that partners with Boston Children's Hospital specifically for adult patients who have congenital cardiac defects.