Scoliosis question

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Is their some sort of scoliosis support group? I have an aquaintence who was given several options by her child's surgeon for surgical treatment of scoliosis. I certainly can't advise her because I never did much peds. However, it occurs to me that perhaps there is some sort of education society or support group for this condition. Of course I am going to google it but it occurs to me that some of you might have personal experience with agencies that give out advice and education and could recommend one you have seen do good things.

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here are a few links.

Scoliosis Support Group - DailyStrength

Scoliosis World

Scoliosis / Family Village

i had scoliosis as a teen, and need t1-t12 fused.

at the rate my curve was growing, i was too late for a brace, and would have been crippled within 2 yrs.

i imagine treatment must be much different these days?

much luck to your friend.

leslie

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Excellent links, thanks so much.

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Specializes in CT stepdown, hospice, psych, ortho.

My parents decided not to get mine fixed and at the time I was too fat for a brace :D Now my back hurts all the time and if I don't concentrate on having picture perfect posture (which hurts like hell!), I have a very noticeable hump on one side. As a matter of fact, going to the doctor tomorrow to get a referral to a surgeon because the older I get (almost 30), the more pain I am having. i wish my parents had just gotten it fixed when i was young but they didn't have the money and didn't want to put me through what must have seemed like major surgery since the doctor wasn't saying it was 100% necessary.

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Specializes in Mother Baby & pre-hospital EMS.

iScoliosis.com is also a good one. :) The FAQ section is pretty neat - the questions are answered in a panel format by physicians.

I have scoliosis as well and wore a Boston TLSO for a few years without having surgery. The curve is still pretty moderate (about 39 degrees), so it will just have to be monitored through the years.

Hope everything goes well with your acquaintance's child!

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Specializes in Rehab, Infection, LTC.

my best friend growing up had severe scoliosis. the shriner's took wonderful care of her. she was in a body cast for a year when she was a small girl. i'll never forget the shriner's and the care they gave her.

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Specializes in Mother Baby & pre-hospital EMS.

southernbeegirl,

I went to Shriner's for most of my care, too! I agree, they are wonderful. :)

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wow...the shriner's in boston, is a burn institute.

but their care is also known to be outstanding.

leslie

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My parents decided not to get mine fixed and at the time I was too fat for a brace :D Now my back hurts all the time and if I don't concentrate on having picture perfect posture (which hurts like hell!), I have a very noticeable hump on one side. As a matter of fact, going to the doctor tomorrow to get a referral to a surgeon because the older I get (almost 30), the more pain I am having. i wish my parents had just gotten it fixed when i was young but they didn't have the money and didn't want to put me through what must have seemed like major surgery since the doctor wasn't saying it was 100% necessary.
Hoping everything goes well with it.
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