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I know! It helps me also to know the conventional wisdom on Bex's extra condition- (Synrinx cyst) that it may have been an "incidental finding" from the scoli or it may be a blessing in disguise that we found it young, because we can watch it with MRIs every 1-2 years (no radiation) and do surgery if it grows or causes a problem. In the past when there were no MRIs it did cause paralysis of a very famous golfer around the time of the Great Depression- he was the most famous athlete in the world and very beloved. It didn't affect him until he was older, but certainly symptoms would show up before than (tingling or numbness in limbs or hands, etc.).In short, I try to feel lucky that we can watch it and put my faith and hope in the best outcome.I back burner

it. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Sat, February 5, 2011 5:20:00 PMSubject: Re: MRI results

Thanks for that. It is very scary and overwhelming to make these decisions for our children. Always hoping that we are making the right choices and putting our faith in the abilities and knowledge of the specialists. Keeley Sent from my BlackBerry® wireless handheldFrom: NIck Guthe <nickguthe@...>

Sender: infantile scoliosis treatment

Date: Sat, 05 Feb 2011 17:03:01 -0800 (PST)<infantile scoliosis treatment >Reply infantile scoliosis treatment

Subject: Re: MRI results

Keeley,We have a situation with Bex, a Syrinx cyst, we also have to watch because it could cause paralysis, as well. I put it out of my mind between MRIs and that seems to help- we're doing everything we can and it may never affect him. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Keeley Szysky

<kfaul@...>infantile scoliosis treatment Sent: Sun, January 30, 2011 7:37:19 PMSubject: RE: MRI results

Well, won’t have surgery. They are

still going to cast him. He has an intramedullary lipoma. The lipoma is not

hurting anything (thank God). It can cause paralysis so we really have to

watch it. Hopefully the casting will work, but I am sure that he will need

some sort of surgery. I hope that the casting won’t cause any damage- the risk

is there though. Scared, but trying to be hopeful. Keeley

From: infantile scoliosis treatment [mailto: infantile scoliosis treatment ] On Behalf Of

Sent: Thursday, January 20, 2011

8:33 PM

infantile scoliosis treatment

Subject: Re:

MRI results

So sorry

to hear these results. We had a bad MRI too..chiari malformation that led to

brain surgery. You will and can get thru this. Trust me you are much stronger

than you think. Thinking of you. Please post what the neuro says.

kfaul@... wrote:

>We are seeing the neurosurgeon and ortho on Wednesday. Then we will know

how they will proceed.

>I am sure that they will want to remove it as soon as possible. It runs

from the c9 to t11. It is very big.

>Thanks for the support.

>

>Keeley

>Sent from my BlackBerry® wireless handheld

>

> MRI results

>

>We were told that it would take upto 14days before we woupd hear anything

about

>coopers MRI results.

>

>So our Dr called tonight and told us that has a lipoma tumor in his

>spinal canal. This is the worst news I could have imagined. This changes

all

>courses of treatments!

>Sad and very concerned!

>

>Keeley

>

>

>Sent from my BlackBerry® wireless handheld

>

>------------------------------------

>

>

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  • 6 months later...

Great news Jen!

From: Heath <jaheath86@...>Subject: MRI Resultsinfantile scoliosis treatment Date: Tuesday, August 9, 2011, 9:41 PM

Hello friends.I just wanted to thank you all immensely for your prayers for our . He has his MRI this morning, and he did beautifully. The pediatrician called this evening, and everything was NORMAL. Make a joyful noise onto the Lord!Jen

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Best news Ever!! so happy you you guys mommy to thaddeus On 2011-08-09, at 6:41 PM, " Heath" <jaheath86@...> wrote:

Hello friends.

I just wanted to thank you all immensely for your prayers for our . He has his MRI this morning, and he did beautifully. The pediatrician called this evening, and everything was NORMAL. Make a joyful noise onto the Lord!

Jen

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Whoo hoo! Great news Jen… From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of HeathSent: Tuesday, August 09, 2011 7:41 PMinfantile scoliosis treatment Subject: MRI Results Hello friends.I just wanted to thank you all immensely for your prayers for our . He has his MRI this morning, and he did beautifully. The pediatrician called this evening, and everything was NORMAL. Make a joyful noise onto the Lord!Jen

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What a blessing!!! Great news!Crystal

From: Heath <jaheath86@...>Subject: MRI Resultsinfantile scoliosis treatment Date: Tuesday, August 9, 2011, 9:41 PM

Hello friends.I just wanted to thank you all immensely for your prayers for our . He has his MRI this morning, and he did beautifully. The pediatrician called this evening, and everything was NORMAL. Make a joyful noise onto the Lord!Jen

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Hi ,Glad you have some answers!! Ive seen other babes respond wonderfully post detethering and Im sure they will chime in w/ details.Glad you & your docs are on the ball w/ this!Way to advocate!HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of brendalinnia77Sent: Thursday, August 11, 2011 11:52 AMinfantile scoliosis treatment Subject: MRI Results Hi everyone!!So, we received Layla's MRI results today and it looks as if she may have a tethered spinal cord, it's at the base, which may be causing the aggressive progression of her scoliosis. We now have an appointment on the 25th of this month with the Neurosurgeon, to discuss further. While I know that a tethered cord is not necessarily a good thing, I almost feel relieved in a way, because now we (possibly) have an answer as to " why " ...and if this IS the problem, her ortho said that once it is " taken care of " , the scoliosis is much more managable....Any input? Anyone experience this in the past? What to expect?Thanks again,I'm so grateful to this group!!!!!!!~

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