View Full Version : Sorry I've been MIA ???? on Veptr

4th July 2005, 07:35 AM
Hi all I'm not sure what I last told you all. We went to the shriner's about 2 weeks ago and it went well. But I do have a question Dr Betz said because Lauren doesn't have Fused ribs he has to ask for Compassition (spelling) use by the FDA and if they Veptr is in by surgery date she will get it if not then it'll be growning rods. Has anyone else had this and do you recall how long it took for an answer from the FDA? I asked his Nurse as I forgot to ask him and she said up ward of 2 months and he wants her surgery schedule within 3 months. Do you'll think we have a chance of getting the ok before 3 months anyone who has dealt with this please help. Cathy PS this is Lauren's mom you proably know me better by that.

4th July 2005, 09:54 PM
Hi Cathy,
I am sorry I have no experience at all about the VEPTR and the FDA approval but I just wanted to wish you the best of luck. I am delighted that Lauren got referred to Shriners, from what I have read they have a tremendous record with treating scoliosis. Hope you and all the other little ones are coping well, let us know how you get on. :hug:

Amazed Jean
5th July 2005, 06:17 AM
Laurens Mom - I'm no help either except to say Good Job Mom You are obviously headed in the right direction! Good Luck!

5th July 2005, 01:42 PM
That's one of the unfortunate things about an official testing phase, quite specific criteria are set. For example, the artificial discs which are currently in trial are not allowed to be used in people with more than one level of degeneration, with previous spinal fusion, with scoliosis, with greater than grade one spondylolisthesis etc. Fingers crossed and I hope that Lauren does get to have the veptr, however if it comes to it that she has growth rods instead, they're well tested and work extremely well in the vast majority of cases, especially the simpler ones where there are not addition complications such as fused ribs needing separation and support, and Dr Betz is a great doctor so she's in really good hands :-)