Off for Dakota's full spinal MRI *results added, post #19!* - Page 2 - Mothering Forums

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#31 of 37 Old 09-03-2008, 06:08 PM
 
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Originally Posted by sunflowers View Post
I don't know anything about a tethered spinal cord but my dd does have a Chiari I with syrinx's.
DD has a Chiari Type II and a couple syrinx. The syrinx are a bit symptomatic but not worth doing the surgery. I guess to drain the syrinx and keep them that way we'd have to do the Chiari surgery.

We almost did a tethered cord surgery once and I am glad at the last minute we weren't able to because of blood work. It turned out her symptoms were not due to her tethering but due to something else entirely. It's hard to judge when with someone like dd, there are so many things that could be causing things.

I agree with everyone and getting 2nd and 3rd opinions.
I know people here (in Minneapolis) who have driven their kids to Chicago for some more opinions...and we have some good ped. neurosurgeons here.

Good luck

Me : , husband ,daughter Raven : 10-28-95 :
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#32 of 37 Old 09-03-2008, 08:16 PM
 
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Originally Posted by judejude View Post
DD has a Chiari Type II and a couple syrinx. The syrinx are a bit symptomatic but not worth doing the surgery. I guess to drain the syrinx and keep them that way we'd have to do the Chiari surgery.

We almost did a tethered cord surgery once and I am glad at the last minute we weren't able to because of blood work. It turned out her symptoms were not due to her tethering but due to something else entirely. It's hard to judge when with someone like dd, there are so many things that could be causing things.

I agree with everyone and getting 2nd and 3rd opinions.
I know people here (in Minneapolis) who have driven their kids to Chicago for some more opinions...and we have some good ped. neurosurgeons here.

Good luck

Dr. McLone is highly recommended.

http://www.childrensmemorial.org/fin...os.aspx?id=809

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#33 of 37 Old 09-03-2008, 08:36 PM
 
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Awww, crap. I'm sorry you didn't get any definite answers yet! Here's hoping you know something really soon.

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#34 of 37 Old 09-08-2008, 12:44 PM
 
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Ok, so now I'm pissed and confused.

They NS talked to the pedi and said it was totally normal and she didn't need to see him or ever get another MRI.
I said "What about the syrinx?" She said he didn't say anything about that. I said "What about the fat and low laying cord?". She said he said it is a 'variation of normal'.

So, I'm going to send her films to the neurosurgeons at John Hopkins. If *they* say it's normal, I'll believe it. I don't believe this guy.

I just can't believe that he would totally ignore the syrinx in the first place and then write off the other two things.
Did you get a copy of the Radiologist interpetation? What does it say? Also, did the NS actually look at the MRI films?

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#35 of 37 Old 09-08-2008, 01:56 PM - Thread Starter
 
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I havent' been able to get the radiology report yet, but I will soon.

As far as I know, the NS did look at the films. I can't prove it one way or the other though. I've since heard that he's not the greatest NS to go to here.

However, I got her an appt for this Friday with a pedi NS in Denver at the Children's Hospital. We'll see what they say too.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
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#36 of 37 Old 09-08-2008, 02:30 PM
 
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Oh good deal!

I keep thinking about the MRI and I am scratching my head about it. I am so happy someone else is going to see you.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#37 of 37 Old 09-08-2008, 07:54 PM
 
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Kathryn. Good luck w/ the new NS.
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