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Member
Posts: 5
| Hi,We are wondering if anyone has used the doctors in NC for the VPTR surgery and what the success was. Our daughter was born with fused ribs and scoliosis. We were told by the Childrens Hosp. in Denver that she would need VPTR surgery. However, they have not done one yet so we are looking into hospitals closer to home. Any help would be great. Thanks, Sunny |
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Elite Veteran
Posts: 833
  
Location: Chittenden County Vermont | Welcome Sunny,
We are up in Vermont but I did post about a week ago inquiring about MDs who do VEPTR in NC, You can search the forum for "Who is the MD in North Carolina " and it should come up. Several folks use him and like him and I am sure they will post for you.
My daughter Maggie had her fused ribs seperated and a Veptr implant on November 11 and it was very successful. She is painfree, breathing well and keeping me on my toes with the terrible 3s. If you want to see a surgery you can go to www.childrenshospital.org, click on for professionals, then on webcasts, the surgery is called Titanium Rib Implant. Let me know if I can help in anyway.
Susanne |
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Expert
Posts: 2039
Location: Springfield, Mo. | We go to Texas so I am not a lot of help here but I wanted to WELCOME you. I do believe I have heard good things from others though.
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Member
Posts: 5
Location: Near Louisville KY | We have been to BOTH Richmond VA & Indianapolis IN...If any of those are closer I'd be happy to tell you more. Both expieriences were good! The Dr in Richmond VA : Dr.TUTEN did an awesome job. Sincerly, Mom of Josiah, 3yrs old with Arthrogryposis |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | SUNNY,
WELCOME TO THE VEPTR BOARD...
ALTHOUGH WE GO TO BOSTON (WE ARE FROM PENNSYLVANIA)...
THERE ARE MORE AND MORE SITES PREFORMING THE SURGERY EVERY DAY...
WE LOOK FORWARD TO HEARING MORE FROM YOU...
GOD BLESS...
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New User
Posts: 1
| i was wondering what type of disablilty your son has. my son jared is 6 years old and has joubert's syndrome. i saw dr tuten on friday. he was very rude and told me my son might not be a candidate for surgery. my son has scoliosis and nothing wrong with his breathing so i'm wondering why the veptr surgery. i'm just nervous. thanks for listening.  audra in richmond va |
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Extreme Veteran
Posts: 424
| Hi, Sunny and welcome. I know there are MD's in GA (Devito and Blanco)and SC. Not sure how long SC has been up and running but GA has only been doing the VEPTR for a couple of years. We live in GA and travel to TX.
Best of luck to you~
Shannon |
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Extreme Veteran
Posts: 557
Location: casper wyoming | Hi Sunny,Iam sorry that I cant help with docs in NC,but want to welcome you.My son was born with fused missing ribs and congintial scoli,we live in wyo so I had my baby in Denver I was told the only thing for him was fusion,We took him to Saltlake to see Dr Smith who did vepter he is now three and doing great.Look forward to getting to know you and your daughter.Your Friend Michelle Wessollek |
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Member
Posts: 7
| we are from new york and due to my daudghters multiple birth defects we now see doctors in cincinatti ohio for hes airway issues and her cogenital scoliosis. They have preformed her spinal fusions and they are about to do her first veptr procedure the doctors name is Dr. crawford. |
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Veteran
Posts: 150
Location: South Carolina | We're from SC. Carter sees Dr. Mooney at the Medical University of South Carolina in Charleston, SC. I think they've been approved for about 2 years now. Carter had his dual VEPTR implant done there in Sept. 07 and has had 2 expansions thus far. His 3rd expansion is scheduled for March 31. We're very pleased. |
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Member
Posts: 11
| Dr. Fred Piehl in Columbia SC does the VEPTR procedure. Our daughter goes to him and we really like him. Medicaid is fighting coverage for the procedure so we have not had it done yet. Dr. Piehl is trying hard to get it covered for her. |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | SORRY TO HEAR THAT YOU HAVE TO "BATTLE"...
I THOUGHT, AND THINK THESE BATTLES WOULD, AND SHOULD BE LONG GONE...I THINK THIS PROCEDURE
HAS PROVEN ITSELF 500 TIMES ALREADY...AND I AM HAPPY TO USE "ZOE" AS AN EXAMPLE...
WE ALSO AT ONE POINT, HAD A BATTLE WITH OUR STATE...WE LIVE IN PENNSYLVANIA, AND HAVE TAKEN ZOE TO BOSTON FOR THE
IMPLANTS, AND WHEN THE FIRST TIME IN 9 YEARS WE ASK "OUR STATE"...AFTER LOSSING OUR PRIVATE INSURANCE,
FOR HELP, WE HAD A "SURGERY DENIAL FOR BOSTON"...THEY WANTED US IN OUR "OWN STATE"...
BETWEEN MY DAUGHTER AND MYSELF, WE REACHED THE GOV. OFFICE...AND THE DECISION WAS REVERSED
WITHIN 6 HOURS...
HOW IS WISH IT WERE, AS WAS POSSIBLE TO HAVE KEPT ZOE IN OUR "OWN STATE"...LIFE WOULD HAVE BEEN MAYBE A BIT EASIER,
AND MAYBE WE WOULD HAVE OUR "NEST EGG" BACK...BUT WE WE HAVE NO REGRETS..."THE TITANIUM RIBS" HAVE SAVED ZOES LIFE...
AND GIVEN HER A QUALITY OF LIFE, WE THANK GOD FOR EVERY DAY...
RING EVERY BELL,, AND BLOW EVERY WHISTLE...
KEEP IN TOUCH...AND KEEP US POSTED...
GOD BLESS... |
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researching doctors for our daughter
