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Esa
05-20-2008, 04:08 PM
For those who haven't seen me post before I have a 9 year old daughter who was diagnosed with congenital (they just changed it from idiopathic) scoliosis at 1 year old. Since then she has been braced and cast. We have been able to maintain her curves fairly well over the years but she has finally progressed to the point where her dr is recommending surgery. She has been seeing Dr. D'Astous at the SLC Shriner's since she was diagnosed. In January I found some info on VBS and had her xrays and file sent to Dr. Betz in Philly to see if she was a candidate for that. (unfortunately she wasn't) So we also went to Dr. John Smith at Primary Children's here in Salt Lake, and he has recommended VEPTR. At this point I don't know whether to go with growth rods and the doctor we have been going to for 8 years. The doctor who I trust, but don't like the idea of growth rods too much due to the possibility of the spontaneous fusion. Or to go with the doctor we have met once but comes highly recommended, who is recommending a surgery that also has some rather serious prospects of severe complications. Anyone who has any input for me would be greatly appreciated!

Thanks!

Carmell
05-20-2008, 04:34 PM
My opinion again... :)

We have a similar connection/affection for Dr. Smith since he has been Braydon's surgeon since Braydon was 5 days old. Dr. D is familiar to you and you have a special relationship with him. He knows Jasmine inside and out. Dr. D has done several VEPTR surgeries and I think the biggest reason he isn't recommending them is because he doesn't have hospital (financial) support.

That being said, if she were my child, I would go for VEPTR. If for some reason the VEPTR device fails her, you can always turn back to the growing rods, if needed. VEPTR is less invasive to the spine than growing rods. Dr. Smith has extensive experience with VEPTR surgeries (his famous quote is "the decision is harder than the incision") so she will have an expert helping her get the most out of the procedure. Dr. Smith and PCMC have lots of experience so she will be in great hands. The post-op care is as important as the surgeons skills, IMHO.

I may be biased, but this was our thought process before we decided on VEPTR for Braydon, nearly 7 years ago now. Good luck and let us know how things go.

ecnw
05-24-2008, 12:05 AM
Here's my opion on growth rods....
We've been seen by Dr. Diab at UCSF and my daughter has them. We're hoping this July she'll actually get her fusion (it will be her seventh spinal surgery). Yes, you do have surgery every sixth months, and the first one takes a little more time to recover from, but after that, it's a same day proceedure, and they're back to normal activities in a week or two. Just looking at the x-rays her spine has looked great, growing up nice and tall (she's 5'6"). She had the first one at age nine, and only has missed out on things like rollar coasters (she's not very sporty). She was at first attached to her brace like a security blanket fearing something would happen to the rods, now she takes it off all the time for the beach, swimming, and at home.
Also, Dr. Diab attached her rods at the top to the rib cage, not the spine, to allow for more growth.
You really have go with your gut feeling on what to do. For us, this was the best method.
Emily

mariaf
05-24-2008, 08:09 AM
She was at first attached to her brace like a security blanket fearing something would happen to the rods, now she takes it off all the time for the beach, swimming, and at home.

I am curious about something. Perhaps those of you familiar with growth rods (and even VEPTR) can tell me - do the orthos usually brace kids who have growth rods? (I thought they did not necessarily with VEPTR but I'm not sure.)

Also - if they do, I assume it is because they worry the rods could break.

I seem to recall, a few years ago, our former ortho talking about patients of hers who had growth rods and that she DID brace them. But I also have gotten the impression from others that some patients with growth rods were NOT braced.

I'm interested in hearing what various orthos recommend.

Thanks!

Esa
05-25-2008, 03:16 PM
Dr. D'Astous has recommended a protective brace if we go with the growth rods, but Dr. Smith has said that she wouldn't need one if we go with VEPTR. I suspect that it comes down to what the specific ortho thinks.

mariaf
05-25-2008, 08:55 PM
Thanks, Esa.

Also, it seems that I have heard more orthos recommend the brace with the growth rods than VEPTR - but again, that could just be a coincidence. And it's not to say that all orthos would recommend the brace with the growth rods - or that none would recommend it with VEPTR.

Does anyone know if growth rods are more prone to breaking than VEPTR? These two options (growth rods and VEPTR) seem to come up a lot for kids who are still growing and I'm just trying to educate myself :-)

Thanks!

ecnw
05-26-2008, 11:59 AM
We have the brace with the rods mostly to protect Shelby out in public. The growth rods are tempory, only hooked into place. Most people don't even notice the brace at first, and the way kids are just jumping on each other or pushing each other around at school it helps to make sure nothing gets loose.
We did have one time we thought maybe the rod had twisted or came loose with a growth spurt because her back looked different near the top of a rod, but everything was ok, Shelby did grow and needed the rods to be stretched.
Just so you know, when they do lengthen the rods, it's only a few centimeters, maybe equal to an inch. It never sounds like a lot, but you'll notice the difference.
I don't know if veptr kids have this, but having surgery on the same site makes Shelby jump if anyone touches her back. She's very sensitive in that area. So I know wearing the brace calms her fears in public.
Emily

Carmell
05-27-2008, 05:39 PM
Hi Emily,

Braydon is very much like Shelby with his back. He has had 13 expansion surgeries with his VEPTR rods (over almost 7 years). His back, especially near the incisions) is VERY sensitive to touch. He doesn't like being hugged because his back is sensitive. He says it doesn't hurt, it just bothers him. I think re-opening the incisions frequently mess with the nerve endings near the skin surface. I'm sure it makes that area more hyper-sensitive.

The VEPTR rods are literally internal braces. They are securely placed during surgery so no external brace is necessary. That being said, there are a few situations when a brace is recommended (or when a brace is requested). In very young kids who are very active and don't know to restrict their activity when they need to, a brace may be necessary. In some kids with extreme muscle/soft tissue weakness, a brace may help support their torso. In kids with mental disabilities who can't understand reasoning why they need to be a little careful, a brace helps "remind" them their bodies need a little protection. Most of the VEPTR kids have no physical restrictions except for no full contact sports. However, most don't do activities that require continuous jumping/jarring of the spine or things that are acutely dangerous. Common sense plays a big part in this. Some parents request a brace so their child will be "reminded" they need to be careful.

Some surgeons who recommend braces are erring on the side of caution. They don't have the extensive experience that tells them these kids are going to be fine with or without a brace. The converse is also true - if they are going to have a complication like rod breakage, migration, etc., they may have it with or without the brace. The brace becomes a non-issue. The surgeons with the most experience with VEPTR in their patients recommend bracing the least.

mariaf
05-27-2008, 08:34 PM
Thanks, Carmell. Makes perfect sense - and it's interesting that the surgeons with the most VEPTR experience recommend bracing the least. It does seem like bracing is sometimes strictly the result of erring on the side of caution, especially for VEPTR kids.

I also agree with what you said about common sense - some things are just not worth the risk. For example, even with VBS, while there really are no restrictions, I would avoid very extreme activities if possible (trampolines, really rough roller coasters, etc.). Again, that's just me not wanting to tempt fate too much :-)