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Straight Talk | Understanding Scoliosis and Thoracic Insufficiency Syndrome
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Long-term care and future treatment advances
The future is brighter for children treated for early onset scoliosis and thoracic insufficiency syndrome, thanks to treatment and research advances being made at The Children’s Hospital of Philadelphia.
Transcript: Long-term care and future treatment advances
John Dormans, MD: With both the VEPTR and the growing rod surgeries, generally we're going back every 6 to 8 months and lengthening the device.
Robert Campbell, MD: We access the devices through about a one-inch incision. Unlock them, expand them, and then relock them.
Michael Nance, MD: Typically, these are outpatient procedures are much better tolerated.
Sandra Franz, Mother: Recovery from a lengthening is so much quicker.
Michelle Holliman, Mother: We're at the point now where we're in and out within a day or so. I'm hoping to get to the point where we're out the same day.
Michael Nance, MD: But it's an additional operation, and I think nobody would choose to have that if they didn't need to. So, I think, the kids are extraordinary in what they're able to deal with.
Sandra Franz, Mother: My daughter is going to be 9, and she's healthy, happy, doing everything that she can do.
John Dormans, MD: One of the up sides of caring for young children -- one of the advantages is that they're so resilient.
Robert Campbell, MD: I've had children with VEPTRs in playing football, soccer, there's no restriction whatsoever.
Tabitha Holliman: I can run. I can, like, jump on the beds, even though I wasn't supposed to.
Michelle Holliman, Mother: She has got a spirit about her. She'll try anything. Like the art museum steps.
Tabitha Holliman: And as soon as we got there I did the Rocky thing, and then there was more stairs to do.
Robert Campbell, MD: The children with these devices -- generally don't notice them.
John Dormans, MD: Once we've hit 10, 11, 12 years of age, the need to lengthen the spine or distract and improve the situation more diminishes. So those patients are pretty much at the end of the road for their surgery. And the "growing rod graduates" as we call them are becoming more and more common.
Raymond Kleposki, MSN: Dr. Campbell is starting to see the graduation of his oldest VEPTR patients into the definitive time when the spine finishes growing.
Robert Campbell, MD: We feel the future is bright for these children, but we don't know how bright.
Michael Nance, MD: These kids truly are pioneers. We don't know whether they'll outgrow their lung function again.
Robert Campbell, MD: Most children untreated would probably have a very dim future -- a life expectancy limited.
Raymond Kleposki, MSN: Twenty years ago, they would not live past 3 to 4 years of age with the diagnosis they have.
Robert Campbell, MD: Are these children going to see 70 or 80 years? We don't know. But it's looking very hopeful right now.
John Dormans, MD: We challenge each other. We never assume that what we do is as good as it can get.
Robert Campbell, MD: There's a constant need to improve things.
John Dormans, MD: We're always looking for a better way. Something that's safer. Something that's easier on the patient and family.
Oscar Henry Mayer, MD: One of the nice things about working at CHOP is because of the size and the resources behind it, there's the ability to take new and novel ideas and develop them effectively.
John Flynn, MD: I think we're going to get to the point where the techniques are safer. They're less invasive. They're more consistent.
Robert Campbell, MD: And hopefully, the VEPTR device will be obsolete at some point because something a lot better exists for treatment of these children.
Raymond Kleposki, MSN: Who knows what the future holds as far as the devices go?
John Flynn, MD: If you just look at the package that a family is offered today compared to 15 years ago and you project that forward 10 or 15 years, I think it's really hopeful.
Michael Nance, MD: CHOP is a place where hope lives, so it is an opportunity to try to find solutions to problems that didn't have solutions before or are extraordinarily challenging.
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