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Adult with Vacterls, new to the site Jump to page : 1 Now viewing page 1 [25 messages per page] | View previous thread :: View next thread |
VEPTR Sites/Hospitals -> United states | Message format |
rockymarley |
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New User Posts: 2 | Hello everybody, My name is Haylie and i'm 24 years old. I have VACTERL or VATER syndrome and my main issue right now is that i have a 95 degree curve in my spine. I have had 2 surgeries already to try and correct it. When i was 3 years old they did a spinal fusion, which didn't work. When i was 16 I got titanium rods put in, but that also didn't work. I'm looking into getting the VEPTR done, but i'm concerned that it's only for children who haven't stopped growing yet. I was hoping to find another adult who has had the surgery done. I first heard about the VEPTR from my previous ortho doctor right after I got my rods put in. However, I didn't really know what it was until the Vater Conference in 2009 and Dr. Campbell came and showed us what it was and what it could do. As for my Vaters, I was born with tetrology of fallot, t/e fistula, missing left radius, lower functioning kidneys, and missing left thumb. I've had my heart fixed, my t/e fixed and even my left hand taken care of. All that's left is my back/lungs. Thanks for any information about this. Also, thanks to Johanna for keeping me informed! | ||
Wendy |
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Extreme Veteran Posts: 599 Location: Southern California | Welcome Haylie! I don't have answers for you, unfortunately, but I do hope you contact one of the more veteran VEPTR docs offices (Dr. Campbell would be a great start)--and see if they could briefly answer your question/s -- if not via phone by email... Best of luck. Your VACTERL issues are very close to my son's. I'm really glad to hear you are doing well (particularly with your heart)!!! | ||
Carmell |
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Expert Posts: 3243 Location: Utah | Hi Haylie, I met you at the VACTERL conference! I know how much spine issues can affect your quality of life. The VEPTR is typically used for children who have vertical growth remaining. However, I don't think it would be a bad idea to consult with the team of docs at CHOP. They have a comprehensive program that may address your breathing issues, as well as spine issues. Another place to consider is Dr. Boachie in NYC. He does amazing things for people who have been given no hope previously. The only drawback with Dr. Boachie is that he and the hospital do not accept insurance - cash only. I hope you find answers sooner than later. | ||
rockymarley |
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New User Posts: 2 | Hi Carmell! I just looked at your website and Braydon's back before the VEPTR looks so similar to mine, it's crazy! I know this is for kids who are still growing, however, I recently got in contact with a 41 year old woman who had the surgery with success! She lives in England though, so I don't know if there are any doctors here that would be willing to do it. I am definitely going to contact Dr. Campbell and I already have an appointment with a local ortho doctor to start the process. -Haylie | ||
Emily's Mom |
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Expert Posts: 1582 Location: Greenbush, Minnesota | Hi Haylie ~ Just wanted to welcome you and wish you luck with your appointment. I hope you hear back from Dr. Campbell soon! Take care!! | ||
Zoes Nana |
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Expert Posts: 3970 Location: Plymouth, Pennsylvania | HI HAYLIE, GLAD YOU POPPED OVER TO THIS SITE... I TALKED WITH OUR FRIEND MARIA IN ENGLAND, AND SENT THE INFORMATION SHE GAVE ME UP TO DR. EMANS UP IN BOSTON BEFORE I WENT ON VACATION.... ALSO SENT IT ON A SUGGESTION FROM OUR VEPTR COOR. TO DR. SMITH IN UTAH...FDA IS NOT ALLOWING THIS TO BE DONE IN THE USA...BUT LIKE ALL THINGS...THERE ARE WAYS AROUND THAT I AM SURE OF IT...HANG IN THERE...I KNOW THERE IS HELP COMING.... | ||
Carmell |
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Expert Posts: 3243 Location: Utah | Another suggestion might be Dr. Skaggs in LA. He seems to find ways around the "rules" to give people the help they need... | ||
Zoes Nana |
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Expert Posts: 3970 Location: Plymouth, Pennsylvania | GOOD IDEA CARMELL...WENDY, MAYBE YOU COULD SHOT DR. SKAGGS AN EMAIL....??? IF YOU NEED I CAN SEND YOU WHAT I HAVE OR SEND IT TO HIM... THANKS... Edited by Zoes Nana 2010-08-12 2:02 PM | ||
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