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Looking for advice on kiddos getting spinal fusion too early. When Brett started

his surgeries, I had a whole notebook full of advice that I cannot seem to find

now that I need it. I want to say that I remember lots of people that had issues

with rotating of the spine or crank shafting as they got older. If this is the

case for anyone, would you mind responding.

Our situation: Brett had growing rods put in his back in 2007. He had 4

lengthening and has not had one since 2009. Now they want to just leave his rods

in and be done with it. Apparently, the new thing to do is to not do a fusion on

immobile patients. I am not sure what to think of this. Brett would like 1 more

surgery because he wants to be as tall as he can be. I thought crank shafting

was an issue when fused too early and if that is the case, than I think one more

surgery needs to be done too. I don't think they will do one just because Brett

wants to, so I want to go in to our appointment in April armed with lots of

information. Thanks!

Kristal- Mom to Brett- SMA II- 12 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

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I had old style rods put in me when I was 6 years-old (I am now 34). They did

stunt my growth but they didn't have growing rods back then. Sorry I can't offer

more advice. ~a

From: Kristal <kkoehler47@...>

Subject: Spinal Fusion

" SMA Friends " < >

Date: Thursday, February 2, 2012, 7:53 PM

 

Looking for advice on kiddos getting spinal fusion too early. When Brett

started his surgeries, I had a whole notebook full of advice that I cannot seem

to find now that I need it. I want to say that I remember lots of people that

had issues with rotating of the spine or crank shafting as they got older. If

this is the case for anyone, would you mind responding.

Our situation: Brett had growing rods put in his back in 2007. He had 4

lengthening and has not had one since 2009. Now they want to just leave his rods

in and be done with it. Apparently, the new thing to do is to not do a fusion on

immobile patients. I am not sure what to think of this. Brett would like 1 more

surgery because he wants to be as tall as he can be. I thought crank shafting

was an issue when fused too early and if that is the case, than I think one more

surgery needs to be done too. I don't think they will do one just because Brett

wants to, so I want to go in to our appointment in April armed with lots of

information. Thanks!

Kristal- Mom to Brett- SMA II- 12 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

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Like so many here, my rods are " old school " , having been put in 40 years ago at

the age of 7. I come from a tall family

(mom = 5'7 " / dad = 6'2 " / sister = 5'8 " / brother = 6'4 " ), but I turned out a

respectable 5'2 " . While I can definitely understand your son wanting to reach

his full height, I would really weigh the possible inches vs. the possible

complications of surgery and anesthesia. One complication for me was a ruptured

appendix that almost killed me. That came from my body trying to cope with

post-surgical infection. Each surgery for me has come at a price, so now I

weigh every procedure carefully and if it isn't necessary, I don't do it.

Just another perspective to consider. Hope you get the info you need!

>

> From: Kristal <kkoehler47@...>

> Subject: Spinal Fusion

> " SMA Friends " < >

> Date: Thursday, February 2, 2012, 7:53 PM

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> Looking for advice on kiddos getting spinal fusion too early. When Brett

started his surgeries, I had a whole notebook full of advice that I cannot seem

to find now that I need it. I want to say that I remember lots of people that

had issues with rotating of the spine or crank shafting as they got older. If

this is the case for anyone, would you mind responding.

>

>

>

> Our situation: Brett had growing rods put in his back in 2007. He had 4

lengthening and has not had one since 2009. Now they want to just leave his rods

in and be done with it. Apparently, the new thing to do is to not do a fusion on

immobile patients. I am not sure what to think of this. Brett would like 1 more

surgery because he wants to be as tall as he can be. I thought crank shafting

was an issue when fused too early and if that is the case, than I think one more

surgery needs to be done too. I don't think they will do one just because Brett

wants to, so I want to go in to our appointment in April armed with lots of

information. Thanks!

>

> Kristal- Mom to Brett- SMA II- 12 years old

>

> Visit Brett @ www.our-sma-angels.com/brett

>

> OR www.caringbridge.org/visit/brettwilson

>

>

>

>

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