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  #1  
Old 5th October 2006, 04:46 AM
staceythornberry staceythornberry is offline
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I have a 5 year old son with kyphosis. At the age of 6 weeks Luke got an infection in his spine. The infection was extremely severe so they immediately operated. Due to the severity of the infection and the cleaning, his thoracic 8/9 vertebrae collapsed. Immediately after the surgery he was braced. The doctors at the hospital wanted to do another surgery when he was 4 months to fuse his spine. I was scared so got several different opinions. They ranged from bracing to surgery with rods. We decided to go to Shriners Hospital. They did eventually do spinal fusion when he was 1 year old. He has been braced ever since. About 6 months ago they started weaning him out of the brace. All was going well until recently. Now they have noticed it is slightly starting to get worse again. I would love to hear from other people with kyphosis, especially those that had surgery. I'm so scared at the thought of another surgery, and just not sure what to think at this point. Any thoughts or stories to share would be much appreciated. Thanks!
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Old 5th October 2006, 07:19 AM
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Amazed Jean Amazed Jean is offline
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Stacey, Welcome to SSO. There are others here that will be more likey to give you specific advice on such a young child and scoliosis. I am the site fossil at 55 and have never been braced etc. I'm here for moral (Sometimes immoral) support. At any rate welcome !
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I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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Old 5th October 2006, 08:48 AM
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Hi welcome to SSO Stacey, i'm sorry to read about Luke's start to life. If you wanting advice from members who have had surgery and you don't want to do it in a public forum John (zerodegrees), Phil and Andy d are all regulars who had surgery so may wish to PM them. I/m sure once they have read your post they will post a reply.

I hope you can find some answers to the issues facing Luke. This is a fabulous web site offering support and advice to its members. If you have any other questions then just ask away

You may want to look at the pinned posts at the top of the page as they are some really useful information in amongst the posts.

Take care

mark
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  #4  
Old 5th October 2006, 06:17 PM
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Little Ali Little Ali is offline
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Hi there,
Sorry to hear about the hard time you and your son are having Just wanted to say and I hope we can help you out!
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Born 1981 with Spina Bifida Myelomeningocele. Surgery to close lesion at birth. Anterior fusion T11-L5 aged 12. Laminectomy June 06. Posterior fusion with instrumenation T8-T11. Degenerative Disc C4/C5

Waiting for VP Shunt surgery. Under the care of Mr. Tucker who wants to fuse me T2-pelvis!
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Old 5th October 2006, 08:43 PM
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I'm really sorry to hear what your son and you have been through

As you are with Shriners anyway, you might want to contact Dr Randall Betz (I think he's at the Philadelphia one? I'll have to double check), as he has been leading a treatment method called the titanium rib. It's not suitable for all children of course, but as it is a type of growth rod, and so can put off further fusion while the spine is allowed to continue to grow, it could be well worth finding out. Also, if as one hopes surgery of any kind can be avoided, I expect that he or his office will be able to offer you useful advice on what alternative treatment could be pursued, what sort of brace might be best if bracing needs to continue/resume etc

I'm really sorry for the circumstances that have brought you here, but nevertheless
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Diagnosed at 15 with 50 curve, but probably juvenile IS. Fused in kyphosis (by non-specialised ortho) with a/p surgery T10-L2 @ 21, posterior only revision surgery to correct kyphosis @ 29. Now 38 with further revision surgery and extension of fusion to sacrum required to correct residual kyphosis, restore lordosis and address spinal stenosis.
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  #6  
Old 6th October 2006, 02:55 AM
staceythornberry staceythornberry is offline
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Thanks so much for the response and support so far. It's helpful to know there's other people out there with similar problems!
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