View Full Version : Veptr surgery at the Shriners in Philly???

18th October 2005, 07:43 PM
Hi everyone

Lauren finally got a surgery date to get the veptr. But I have so many questions I've been off the board for a while as I just didn't want to face what we were going to have to go thru but now I have questions. If any of you have had the surgery at the shriners I greatly need your input. First how long was your stay if everything when exactly as planned we are being told 5-7 days. Did you have to stay in the area after being released for a check in a few days ( we were told this is a possiblity)? Were both parents able to stay with child in the hospital? If any of you stayed at the Ronald Mcdonald house did they help you set it up or did you have to do that yourself? Did Shriners cover your stay as we have been told by the NJ house that sometimes they do but when I asked the nurse she said she didn't know about that and it would only be for the night before surgery. this I don't understand if we can't both stay in the hospital where is the other parent to stay?

When was your child up and around? When did they seem to get back to everyday play?

I read today that some of you have had to have the implant changed is that a long hospital stay again? Lauren is small also for a 3yr old I thought it was one implant surgery then expanison from here on. I need help I'm so confused. I'll be on and off the board all day trying to get information as we only just found out for sure that it would be Veptr and not growning rods this week. Thanks in advance for any help you can give. Cathy

18th October 2005, 08:22 PM
Conni writes on Carlos Alberto's thread

there is a website specifically for families looking for information or who have already had the surgery and are living with the VEPTR implants at http://veptr.com/

It is a great bunch of people, I joined when Dr. Betz at Philadelphia Shriner's (mentioned in a previous post as a doc who does the VEPTR surgery) suggested this might be an option for Billy. We ended up not having the surgery, but I still hang around since I have many friends there now.

I also know there is at least one family who have had the VEPTR in Montreal.
Hope this helps as we have lomited experience of Veptr

19th October 2005, 02:45 AM
There are also quite a few VEPTR kids on the Yahoo!Group CongenitalScoliosisSupport (http://groups.yahoo.com/group/CongenitalScoliosisSupport). I wish I had more information for you. Unfortunately, back when I was growing up with congenital scoliosis casting and fusion were the only options.

19th October 2005, 05:52 AM

I am on that group also and post but didn't have anyone respond so I thought it was worth a shot that someone here may have some of the anwsers Cathy

19th October 2005, 10:57 AM
Thats disappointing!
I guess the other place to try is Linda racine at NSF forums. I haven't visited the site in a while so not sure if you've joined there.
let me wish you and lauren the very best of luck.I hope it goes well and has the desired result. Please let us know how it goes.
I can appreciate how stressful it mustbe for you, having to take a step into the unknown. We'll be thinking of you.

19th October 2005, 11:28 AM
I'm pretty sure that the Infantile Scoliosis Yahoo Group has parents of kids who've had the VEPTR.

Link to group (http://health.groups.yahoo.com/group/infantile_scoliosis/?yguid=57227978)

Hope this helps! :-)