Luli Scan Shots - can you take a peek?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Luli Scan Shots - can you take a peek?

Postby JenandLuli » Fri Mar 16, 2012 2:05 pm

Hey All!
I know that most of us are researchers trying to find out what is best for our kids! I have compiled a photo album with key shots from Luli's various scans that I find troubling. To ME it looks like a mild Chiari caused by asymmetrical occipital condyles and asymmetrical C-1 but no dr is saying anything about the correlation between the craniocervical junction and Syrinx.

Does anyone have any knowledge that an asymmetrical craniocervical junction can cause Syrinx???

Luli has 2 idiopathic syrinx that are getting bigger dispite draining 1.5 years ago. No one can figure out why!!!

So, Ive been scouring her scans to try and find answers.

Please take a look at them if you have the time or the knowledge to know what you are looking at.

http://s205.photobucket.com/albums/bb31 ... m%20scans/

Thank You So Much!!!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
Image
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Re: Luli Scan Shots - can you take a peek?

Postby lttutrow » Mon Mar 19, 2012 9:55 pm

Have you thought about a second opinion?
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Re: Luli Scan Shots - can you take a peek?

Postby JenandLuli » Tue Mar 20, 2012 2:54 pm

Yeah - In the process....
I'm still trying to get her Kaiser NS to explain it to me and answer my questions. We go see her CHLA NS next month...
I'm just wondering if I'm insane in what I am seeing or if there is really something there.

Poor girl.... they upped her Neurontin but the pain is still growing. She stayed home 2 days last week and yesterday had to stand in class all day because it hurt to sit. :-(
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
Image
JenandLuli
 
Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: Luli Scan Shots - can you take a peek?

Postby nandkmom » Mon Mar 26, 2012 2:55 pm

Looks like a 9 mm chiari to me in the one shot where you show that measurement. (0.9 cm = 9 mm). I also wonder about occult tethered cord as a potential cause of her syrinxs. 1/2 the US neurosurgeons believe in this phenomenon the other half don't. She doesn't look like she has very much room behind the tonsils. The lecture on the CSF website with Dr. Rekate talks about this in some detail. A second opinion sounds like a great idea.

http://csfinfo.org/lectures
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Re: Luli Scan Shots - can you take a peek?

Postby lttutrow » Tue Mar 27, 2012 5:04 pm

I think you are on the right track and asking the right questions, I hope by now they've begun to answer some for you!!! How's the higher dose of Neurontin going? Both of mine take that too.
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