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Thread: Carmell & Braydon are Famous!

  1. #1
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    Carmell & Braydon are Famous!


  2. #2
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    Thanks Linda. It feels pretty good to be able to show the surgeons who are training to do this surgery such a good outcome. One cool part about the day was that we were able to meet the people from Synthes, who manufacture the VEPTR devices. We also found out that Braydon is in their current Demo Video that they show to potential customers. They were happy to meet him too.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
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    I'm sure it was a great day. Do you know if there anyone was there from UCSF? If anyone, it would probably have been Mohammad Diab.

    --Linda

  4. #4
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    Really exciting stuff, way to go Carmell and Braydon !!!!
    This sounds SO awesome too:

    John Smith, M.D., Orthopedic Surgery, PCMC: “Ultimately our goal is to have a self-expanding device that will make it so these children don’t have to have repetitive surgeries. And that’s really our focus for the next few years, is to work on that.”






    Celia

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    Linda - There were no west-coast surgeons at either training session (this session and one a couple of weeks ago in Philly, at Shriners). The surgeons currently doing the training include Dr. Smith from SLC, Dr. Betz and Dr. D'Andrea from Philly, Dr. Skaggs from LA, and Dr. Redding (Pulminologist) and Dr. Song from Seattle. I'm interested in hearing Dr. Diab's expertise and interests. I haven't heard his name mentioned before. I know of several families in northern CA who would be interested in seeing a doc who could help their children. Could you let me know about him?

    Celia - I hadn't heard the news about a self-adjusting device until I saw the news program. You can be sure I'll be checking up on that one. I can imagine the design of the self-expanding device would be similar to devices used in limb lengthening treatments. As the patient grows, the device automatically adjusts to compensate. That would be more than wonderful for these kids.
    Last edited by Carmell; 11-17-2004 at 03:26 PM.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  6. #6
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    Hi Carmell...

    Dr. Diab came to UCSF a few years ago. He was recruited because of his expertise of working with very young kids. Here's his bio:

    http://www.ucsf.edu/orthopaedics/faculty/diab.html

    Regards,
    Linda

  7. #7
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    Hi Carmell,
    In the news article that Linda put up, it says that Braydon will have the ribs removed, when he is done growing. Is this the plan? I'm just curious, because I've always been under the impression that they just leave them in, unless there is a problem. Thanks in advance for your reply!!
    Talk soon,
    Cathy
    P.S. It's so great that they did these articles about Braydon! Getting the word out, about the Veptr is SO important. Who knows how many kids out there might need it, and thier doctors may not have even heard of it! We are supposed to have a media conference this month, and then Nicky's story will be on the TV news, and in the local paper. Hope it can help somebody!!

  8. #8
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    Hi Cathy,

    Good luck with your news conference thing. That sounds great. Like you, I figure if showing off the GOOD that comes from this procedure helps someone else, then its well worth the effort. As you, and all of us, know, this procedure is NOT for everyone. But for the few children who it does help, it is truly a life-altering procedure. The quality of life is invaluable.

    About the "end" procedure... the jury is still out on what exactly to do with these kids once they have reached skeletal maturity. The current thinking (for Braydon especially) is that they will leave the chestwall rod/rib in place, just for stability purposes and remove the hybrid (spine stabilization) rod/rib. At the same time they remove the hybrid rod, they will do a spine stabilization (fusion) surgery to keep the spine in the current corrected position. I'm not sure I like the thoughts of a full-spine fusion. Hopefully in the next 5-10 years they will come up with something less severe to do with these kids. Braydon's spine is weak everywhere so full fusion is the only option at this point. Again, I don't like that, but I'm hopeful they will have a better option.

    Give Nicky a gentle hug from us. I'm so proud of him!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  9. #9
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    Carmell,
    Wow that is so cool. Was that on the news?? I missed it, I wish I would have been able to see it.
    I am so glad Brayden is doing so well.
    Hugs from your fellow Utahn's
    Michele and Nathan

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  11. #11
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    Thanks for posting this, Linda. I didn't see this article.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  12. #12
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    Still more press:

    http://news.enquirer.com/apps/pbcs.d...WS01/503220385

    Note especially "The Kimballs found out about the treatment from communicating on the Internet with other families of children with severe scoliosis."

    --Linda

  13. #13
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    More press for the titanium rib project:

    http://www.tuscaloosanews.com/apps/p.../APN/508100544

  14. #14
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    Quote Originally Posted by LindaRacine
    Still more press:

    http://news.enquirer.com/apps/pbcs.d...WS01/503220385

    Note especially "The Kimballs found out about the treatment from communicating on the Internet with other families of children with severe scoliosis."

    --Linda
    Hi linda,
    That is MY daughter that the article is about. It was very cool to be interviewed and I have become an unofficial ambassador of sorts to other parents and patients being seen at Cincinnati Children's Hospital.
    Gail
    ************************
    Mom to: Patrick, 11/28/98, ADHD/ODD/SID
    Erin, 02/02/02, Congenital Scoliosis, Torticollis, VATER Association, Klippel Feil Syndrome, One Kidney, Fused Ribs, VEPTR Surgery 03/21/05, First VEPTR recipient at Cincinnati Children's Hospital, First VEPTR Expansion 11/1/05
    You can see more of Erin's Journey here: http://www.carepages.com/ServeCarePage?cpn=ErinsCare

  15. #15
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    Hi Gail...

    Dr. Crawford is one of my favorite people. I don't think I've ever met any of his patients, but I bet they all love him. He's got a very contagious positive personality.

    --Linda

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