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Exploratory Surgery

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Hi ya'll...

Well, at the request of our ortho and urologist, we are heading back to the neuro-surgeon. The hint seems to be that they want him to consider exploratory surgery on Grace's spine to fully rule out tethered cord, fatty fillium, or just plain something being pinched. Nothing shows up on MRI. BUT, we did notice that when we use the TENS unit since Grace has been casted (and therefore her spine is straighter) that she has way more sensation in her low back. She can't handle the higher settings of the unit in cast. Prior to going back into a cast, she wouldn't even flinch with it at almost the highest settings. It tells me there is SOMETHING wrong and in my opinion, is fixable!

I am so torn about what I want done. A huge part of me is YES! At least someone is trying to figure these problems out, but a small piece of me is worried they will find nothing and we will really be at the point of there being nothing anyone can do to help Grace be potty trained.

Just looking for advice on what you all might do in our situation.

Thanks!

Jane

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Oh Jane this is a hard one. I think I would probably go ahead with the surgery. You know there is something going with the sensation in cast so I would think there is a good chance something might be pinched. I would worry about doing the surgery and nothing coming out of it but right now you don't really have any answers eaither. I wonder what the Nuro will say. Maybe someone will chime in who's child has had a tethered cord surgery Sent from my iPhoneOn Feb 4, 2011, at 12:22 PM, Jane Bigler <janemhar@...> wrote:

Hi ya'll...

Well, at the request of our ortho and urologist, we are heading back to the neuro-surgeon. The hint seems to be that they want him to consider exploratory surgery on Grace's spine to fully rule out tethered cord, fatty fillium, or just plain something being pinched. Nothing shows up on MRI. BUT, we did notice that when we use the TENS unit since Grace has been casted (and therefore her spine is straighter) that she has way more sensation in her low back. She can't handle the higher settings of the unit in cast. Prior to going back into a cast, she wouldn't even flinch with it at almost the highest settings. It tells me there is SOMETHING wrong and in my opinion, is fixable!

I am so torn about what I want done. A huge part of me is YES! At least someone is trying to figure these problems out, but a small piece of me is worried they will find nothing and we will really be at the point of there being nothing anyone can do to help Grace be potty trained.

Just looking for advice on what you all might do in our situation.

Thanks!

Jane

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Hi Jane,

It's kind of hard to fathom or wrap or fingers around how complex the spine can

be. When Leah had surgery back in September she went in for a tethered

cord,fatty filum and removal of a bone spur in her back. I thought the bone spur

would be the most difficult of the surgery, but it was actually the very long

filum, as it had entangled itelf so deep and twisted. Now, the doctors had no

idea about this as it never showed up this entangled on the MRI/CT scan. Maybe

it was best I didn't know before hand either! The bone spur was my concern as

she was at a huge risk to be paralyzed when removed. So....after my long winded

response, maybe the exploratory surgery WILL give you some answers.Leah came

through the surgery fantastic and has grown so much in height too.

I have gained so much from this group and reading all your experiences has given

me strength to move on....We are awaiting another apt to see if Leah can

possibly be casted. Snow has cancelled our last apt. Good luck and I'll be

thinking of you.

Jo

Leah 3 (Congenital scoli)

>

> Hi ya'll...

>

> Well, at the request of our ortho and urologist, we are heading back to the

> neuro-surgeon.  The hint seems to be that they want him to consider

exploratory

> surgery on Grace's spine to fully rule out tethered cord, fatty fillium, or

just

> plain something being pinched.  Nothing shows up on MRI.  BUT, we did notice

> that when we use the TENS unit since Grace has been casted (and therefore her

> spine is straighter) that she has way more sensation in her low back.  She

can't

> handle the higher settings of the unit in cast.  Prior to going back into a

> cast, she wouldn't even flinch with it at almost the highest settings.  It

tells

> me there is SOMETHING wrong and in my opinion, is fixable!

>

> I am so torn about what I want done.  A huge part of me is YES! At least

> someone is trying to figure these problems out, but a small piece of me is

> worried they will find nothing and we will really be at the point of there

being

> nothing anyone can do to help Grace be potty trained.

>

> Just looking for advice on what you all might do in our situation.

>

> Thanks!

>  

> Jane

>

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