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Member
Posts: 12
Location: Saint Paul, MN | Hello!
Our daughter is 8 years of age and has had VEPTR I rods implanted on each side - anchored to ribs and pelvis - for a little more than a year. JunFen started at Gillette in St. Paul, but we've since transferred to Mayo, as her surgeon at Gillette suffered a terrible car accident - (she has some years of recovery ahead of her.)
JunFen has since had two expansions at Mayo with Dr. Amy McIntosh. We recently contacted Dr. McIntosh regarding JunFen's posture, as she seems to be more hunched over and leaning forward as she grows. We were told that we should consider having JunFen's VEPTR I model changed to the new VEPTR II model when she's ready for rod revision. It seems that the new VEPTR II model creates less of the hunched over posture.
Dr. McIntosh mentioned that the conversion/revision surgery is much bigger. Almost like getting the VEPTR put in the 1st time. UGH!
I'm happy that the new rods could help her posture, but I dread another major surgery.
Any one with kiddos with significant kyphosis who are also thinking of VEPTR II or have experience with VEPTR II? I'd so appreciate hearinfg from you!
Thanks so much -
Karin |
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Member
Posts: 37
Location: Utah | Our son also has rib to pelvis VEPTRs. He has the VEPTR II. Before surgery our doctor showed us both rods side by side. The VEPTR II is definitely much lower profile, we could really see a difference between the two types. He did mention to us that kids with pelvis attachment sometimes have problems with hunched posture and that the VEPTR II does help with that somewhat. We haven't noticed any hunching since his surgery, he didn't have kyphosis to begin with, but we were pleasantly surprised with how good his posture still is, considering he has bilateral pelvic attachments. |
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Member
Posts: 12
Location: Saint Paul, MN | Rachel -
Thanks for sharing your experience! I know it's not productive - but I can't help but be frustrated that the VEPTR II weren't used for JunFen. I just hate putting her through another major surgery in addition to expansions every 6 months. I did not know that kiddos with rib to pelvis attachment tend to hunch over. Thanks for that info. JunFen's first surgeon did not want to attach the VEPTR to her spine so she could still get some growth in that area. That is great news that Collin's posture is good with the VEPTR II. |
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Extreme Veteran
Posts: 582
Location: Southern California | i'm curious why your doc said that there would NOT be growth in the area the veptr was placed on the spine? my son's hybrid veptr was attached to a lumbar vert via a hook (and still is) -- but its not fused into place or anything and the growth plates are still in tact and thus still grow??? The lumbar verts are Alex's best chance for major spine growth... he's had his devices for about nine years now and that area is indeed growing...
I wish, too, that we had the VEPTR 2's... I had at one point inquired about them -- but the reply I got was that yes, it would be like another implant surgery... So we didn't pursue it any further... Alex has developed a rib hump over the years (depending on who you ask, it could be called Kyphosis), but it does not appear to be getting worse--which also aided our decision not to pursue the change... When his rod migrated in past and when he had his rod changed another time -- his back did flatten out quite a bit, lessening the hump... But over time it does go back...
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Elite Veteran
Posts: 803
Location: Woodland Park, Colorado | Nikki's VEPTR I pelvic to spine implants were removed and switched to the VEPTR II due to the same posture issue.
Getting the pelvic implants removed was terrible. It was almost as bad as having them put in. That was 2nd only to the initial implant of the VEPTR I that was rib to spine.
She was switched to the VEPTR II. The dramatic improvement in her posture, muscle tone, lung function, and overall health was worth it. Remember, this is a long-term road for most of our kids. For us, Nikki had such a long road ahead of her for VEPTR treatment that her overall long term health was the deciding factor.
I won't lie. The surgery was not easy. But it's been worth it in the long run. |
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Member
Posts: 12
Location: Saint Paul, MN | Wendy - I'll ask JunFen's new surgeon about the attachment to pelvis vs spine. Now that I think of it....perhpas it was growth rods her first surgeon was was referring to. She said growth rods would prevent growth where they were attached. Does that make sense to you?
"mtnmom" - thanks for sharing your experience. That's great to hear that Nikki's posture was dramatically improved. How old was Nickki when she had the VEPTR I changed to VEPTR II?
Thanks again for the replies!
Karin |
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Elite Veteran
Posts: 803
Location: Woodland Park, Colorado | Hi Karin - Nikki was 8 years old when we switched her to VEPTR II. |
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Elite Veteran
Posts: 924
Location: Vancouver, Canada | Hi there
My daughter got VEPTR 1's implanted at age 6 - rib to pelvis, and like Nikki, started hunching terribly after a year or so. The rods are removed from the pelvis and reattached to the bottom of the spine - the difference was AMAZING  No more stooping!
When she'd outgrown the VEPTR 1's (no more room for expansions), she had them removed and VEPTR 2's were implanted - only the middle section - the (VEPTR 1 rib and spine attachments were left in place, and the "2's" were attached to them).
The '2's' are definetely lower profile - we could virtually read the serial # thru her skin with the 1's!!! 
We go to Shriners, SLC and her doc calls her his "VEPTR Poster Child" 
Keep us posted.....
Jacki |
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Veteran
Posts: 202
Location: Green Bay, Wisonsin | I just asked Hope's ortho doc about possible switching Hope to the VEPTR II. We were told that the only difference was the there were added attachments to the ribs with the VEPTR II. Which would not help Hopes neck. They said her major curve is above her neck and where the VEPTRs don't attach, b/c there are no ribs in the neck. Any one have any ideas on how to treat the curve of the neck? |
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Member
Posts: 8
Location: Bruehl, Germany | Hope's Mum -
our Julian has one curve in his breast (for which he received a VEPTR in Febuary) and another in the lower neck, so we have the same problem that there are no ribs in the neck! However, Julian is scheduled to have a "neck" rod implanted in September to reduce the curve in his neck. See my post on neck surgery. Of course, every child is different, but I'll report how it goes - maybe it would be an option for you too! Corinna |
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New VEPTR II and kyphosis
