|possible VEPRT surgery - NEED HELP|
|My son 5 yrs old, 50 degree curvature was just diagnose and the veptr is what the doctors are telling us he needs. please, please let me know about the recovery and any complications that may occur. How is your son/daughter doing now? and how often does they have go back for adjustments? how do they cope with those ajustments? needless to say that my husband and i are scared and quite confused about all of the new info that is now being given to us. we are in NC, my son's surgery will most likely take place at WakeMed Hospital in Raliegh NC. Any help or info that yo can give to us would be truly appreciated. Thanks Beth|
Location: Monument, CO
|Beth - |
Welcome! You are on the right track checking in here and doing all your other research. Soon, you will hear from many, many great families who will offer more support than you thought possible. They will also share their stories with you and that will be very enlightening. Remember, though, that your son and his needs are very individual and no one here will have the same story. All, though, will be very supportive.
That said, I can give you the highlights of our story. Our Abigail was diagnosed at 3 months with congenital scolosis. At about 9 months, Dr. Campbell made her further diagnoses of Thoracic Insufficiency Syndrome, Thoracic Dysplasia and Respiratory Insufficiency. She was a candidate for the VEPTR and we started our search for her surgeon. At the time, we were very limited in where to take her as the program was not yet FDA approved and there were only 6 sites that were doing the procedure - nationwide. We chose to go to Seattle, WA and have been returning ever since (we live outside of Denver, CO). When she was 17 months old, she had her initial implantation done. She has been back for expansions and/or exchanges about every 6 months since then. She is now 9 years old and has had a total of 17 surgeries. I know that that sounds like a lot, and it is, surgery is nothing to blow off. However, it does, amazingly, get somewhat easier. The expansion surgeries, at least for Abby, tend to be a day type of procedure. We don't do outpatient status, her surgeon actually gets her a room for recovery, but we are usually discharged the same day, provided that surgery is in the morning. It has become somewhat routine in that we all know what to expect. At this point, Abby knows the hospital very well, all of the orthopedic staff know her by name and many others in the hospital know her as well. It is quite a comfort for her to be there and to have everything very predictable.
After surgery (usually on a Thursday), we usually fly home on a Saturday and she is back in school either Monday or Tuesday. Unless you know our family or know Abby well, you would never know that she has had 17 surgeries. She participates in absolutely everything that her 4th grade peers do. She runs, jumps, plays, swims and plays tennis. We live at over 7200 feet in altitude and she rarely stops! The VEPTR, for her, has been a true miracle! It has given her a quality of life that no one ever expected her to have. At initial implant, her curve was 94 degrees. She is simply amazing and we give credit to this procedure and her surgeon for allowing her the breathing room and the growing room to get her to this point. There really is not a lot that these kids can't do that they really miss. They all seem to thrive and find a way to do just what they want to do.
Well, I hope that this has helped and I'm sure that you will get more input very shortly. Feel free to send more questions as you get them.
|Welcome!! This is a great place to get support and ask questions. I know this is all very scary and it is a lot of information to take in. We are still somewhat new to the VEPTR journey, but I will tell you what I am sure most others will say. The initial recovery is tough, but the expansions are usually much much easier. At our last expansion, Collin went home the same day, and by the next morning he was feeling just about normal again. Unfortunately, like with any surgery complications can arise. Before surgery, hearing about the complications is the part that scared me the most. Now, having experienced a few, (infection in one of the incisions and a small migration) I still don't like it, but I have realized that these surgeons have seen it all, and they do what it takes to get it fixed. Despite the bumps in the road we are still very grateful that we had this option available to us and that Collin's curve has improved so drastically allowing him room to breathe and to grow. Collin is also 5 years old. His curve was around 80 degrees pre-op and post-op was around 20 degrees. So far, he has handled everything so well! He understands why his spine needs to stay straight and he really loves his surgeon, and knows that his surgeon is there to help him be the healthiest he can be. He is as active as he ever was, and so far it doesn't seem to be holding him back. We wish you all the best!!|
Location: Plymouth, Pennsylvania
|WELCOME TO THE VEPTR BOARD, AND THANK YOU FOR SHARING YOUR SON WITH US..... |
OUR JOURNEY HAS BEEN OVER 10 YEARS NOW, HARD, BUT WITH CREAT BENEFIT...
ZOE HAS A GREAT LIFE, AND A GREAT QUALITY OF LIFE, SOMETHING SHE WOULD HAD NOT, WERE IT NOT FOR THE
OUR JOURNEY LED US TO BOSTON FOR ZOES CARE, AND WE ARE STILL GOING THERE TODAY....
WITH COORD. CARE INTO PHILA. CHILDRENS....
LOTS OF THOUGHTS AND PRAYERS...ARE WITH YOU, AND WE LOOK FORWARD TO HEARING MORE FROM YOU...
Location: Central New Jersey
|Hi Jakesmom, |
This reply may be late as you may have already found it but attached to this reply is a pdf file from the maker of the VEPTR it is full of information that I found useful in answering some preliminary questions that I had about the device and procedure. I hope that this helps you and anyone else looking for answers.
Well it wouldn't let me attach the file because it is too large. here is the link to the PDF file on the manufacturers website Synthes:
The manufacturers site has alot of info on the device including information for the medical community. There is also a video for the VEPTR which I haven't had the courage to watch yet.
Edited by Callum's Dad 2010-11-17 1:18 AM
|Hello, my name is Shena and I have an eleven year old daughter with jarcho levin syndrome. We have been having these surgeries for almost five years now and without them my daughter would not be with us today. I know you are scared, and have many concerns and questions but you are not alone and that is very normal but as the lady before said you will soon be amazed at the positive stories of veptr surgeries. Your family will be in my prayers!|