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nojobro
12th August 2004, 05:38 PM
This is a copy of part of the medical history post that I just posted. I am copying it here to let people know about the procedure, and to ask if anyone else out there has any information to share. Thanks!

Nola

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Intro info: Bronwen is currently 5 years old, and was diagnosed with infantile idiopathic scoliosis at 18 months. She has worn a brace since she turned two. The highest her curve measured was 35, and she has been measuring 25 out of the brace the past two times we have had it checked.

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For about the last 18 months, Dr. Lubicky has been mentioning a new surgery for scoliosis called vertebral body stapling. This surgery is appropriate for children with moderate progressive curves measuring 20-45 and is currently being done by Dr. Betz at Shriners Philadelphia and by Dr. Lubicky of Shriners Chicago (though he'll be at Rush Children's Hospital starting 9/1/04). I have heard that perhaps two surgeons at Shriners St. Louis are also being trained in the procedure, but I do not know the status of this. Special staples are inserted along the convex side of the curve and serves as a sort of "internal brace". Dr. Lubicky has indicated to me that the surgery works best on specific cases, like my daughter's (flexible curve, stable for the past 3 years, with a lot of growing left to be done). We are trying to set up the surgery for this coming fall at Rush. We'll know more when the insurance responds to our request. The surgery can also be used to delay fusion surgery when there is a vigorously progressing curve in a small child. The staples do not need to be removed, and a fusion, if necessary, can be done as if they are not there. It is NOT appropriate for curves over 50, however. (Disclaimer...this is, of course, my understanding of the procedure <g>.)

Here are a couple links about the procedure, though I feel compelled to point out that they are already out of date; it has been done on over 60 patients by Dr. Lubicky alone at this point (I am not sure about Dr. Betz, though I know it's far more than the 22 surgeries quoted in one of these articles; I'm guessing he has done more than Dr. Lubicky).

http://www.spineuniverse.com/displayarticl...rticle1895.html

http://www.shrinershq.org/whatsnewarch/arc...erview5-03.html

http://www.shrinershq.org/whatsnewarch/arc...wpoint8-01.html

http://www.healthscout.com/news/1/8006702/main.html

If anyone has personal experience with this procedure, knows more about it, or has other links about it, I would be eager to hear from you. My e-mail address is nojobro AT tds.net or nojobro AT yahoo.com (replace the AT with @, of course). We are hoping to have the surgery done in November 2004, if everything pans out well with the insurance <fingers crossed!>. I hope to make a website about our surgery experience when the time comes around and want all the information I can get.

tonibunny
12th August 2004, 06:13 PM
Brilliant, thanks for sharing that Nola! That's really useful information :-)

sins
12th August 2004, 06:25 PM
Hi Nola,
I'm not sure if you've discovered the NSF message boards.
http://www.scoliosis.org/forum/showthread....s=&threadid=219 (http://www.scoliosis.org/forum/showthread.php?s=&threadid=219)
There's a few parents there whose children have had the procedure and some in Shriners.Might be of some help to you.
Sins

nojobro
12th August 2004, 07:31 PM
Oh, thanks so much, sins!

Nola

Amazed Jean
15th September 2004, 02:52 AM
Nola, What an adorable child. You of course have her preregistered at a convent - she is just too cute!