MRI's and Skull Base??? and CSF???

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

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MRI's and Skull Base??? and CSF???

Postby JenandLuli » Thu Jun 12, 2008 1:00 pm

HI! My 2.5 yo daughter had another MRI last week becuase she was having saccral pain.
I have posted the pics and would love feed back from anyone.
The NS has stated in the past that what my dd has is "incidental" and is "persistant central canal". I do not agree. She has 2 distinct syrinx. 1 up high in her cervical/thorasic and one lower in the thorasic/lumbar. The lower one is 7mm and the upper one was 3mm but on the newest MRI looks to me have grown to 4mm.
I am noticing that her SKULL BASE is consistantly uneven - the leftside is higher than the right side. And it appears to me that the right cerebral tonsils are herniating ever so slightly. And/Or the higher leftside is could be causing the pressure to ceate the syinx. Does anyone have any knowledge about skull base asymmetries and how it effects the spinal cord???

A bit of history - born leftside facial paralysis (resolved) left torticollis, right plagiocephaly, facial asymmetries (left smaller that right), dx SM in Aug. 07. Pain started May 08.

Also, my dd had a CSF flow study done. I have a copy of that too. What should it look like? What am I looking for???

The radiologist has not given the report yet... I am waiting on that.

Please let me know what you think!!! Thanks so much!!!!
Image

Here's the link to all the mri's.
http://s205.photobucket.com/albums/bb31 ... =slideshow
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: MRI's and Skull Base??? and CSF???

Postby brianfsmom » Thu Jun 12, 2008 8:54 pm

Hi

Great slide show! I'm afraid I must agree on the syrinx issue - I am no expert by any means, but I assumed a persistent central canal would be a slit that perisisted all the way up the spine. Two spots like that ... I'd think they're syrinxes, like you do. As for the brain asymmetry, that's a tough one. Please post what they say. One MRI that my son had done commented on asymmetrical hemispheres and stated it was probably due to positioning. But you've had it show up again, years later?

Did you get another opinion? I would get several anyway, no matter what I thought of the first one.
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Re: MRI's and Skull Base??? and CSF???

Postby youngwife » Thu Jun 12, 2008 10:29 pm

I think your theory about the skull is very possible. Is it possible for you to take your daughter to a chiari specialist? You are your daughter's best advocate.
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: MRI's and Skull Base??? and CSF???

Postby Bear » Fri Jun 13, 2008 5:34 pm

I would definately look into getting another opinion. Could you send the films to Dr. Frim in Chicago or Dr. Carson in Baltimore? Those are the only two neurosurgeons I have had contact with and I highly recommend both of them. If you think something is not right I think it's best to always follow your instincts. Good luck!
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Re: MRI's and Skull Base??? and CSF???

Postby Sara » Sat Jun 14, 2008 7:56 am

What state do you live in? Who are you seeing for a neurosurgeon? I think you need a second opinion.
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Re: MRI's and Skull Base??? and CSF???

Postby JenandLuli » Sat Jun 14, 2008 1:01 pm

We live in Southern California and have Kaiser - We see Dr. Cahan. I sent my dd's MRI from last Aug. to Dr. Frim and he (or his nurse) said that there was no Chiari - but to me (as just a mom) I clearly see it. Does anyone else see what I am seeing in the MRI????

I called UCLA and it was $650 for a 30 min consult - we just don't have that kind of cash lying around.
We want to take our dd to a Top Dr but we are limited in our income and don't want to spend alot of $$$ on the DX - We are hoping to get a DX thru our ins so that part is covered and the spend the $$$ where it counts - on the treatment with a top notch doc ... if that makes sense.

I went to the ASAP "webinar" last week and learned alot from Dr Oro - does he see peds???
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: MRI's and Skull Base??? and CSF???

Postby Janice » Sat Jun 14, 2008 3:35 pm

There's a so. ca. kaiser doctor who's considered an expert in CM/SM. Roz recently posted the name for someone. I'll see if it's the same person you're seeing and if not, it couldn't hurt to get a referral within the kaiser network.

I can't tell CM by the views you have of her skull. The one (2nd slide) that has the view I know is too dark in that area to see if there is a herniation. Are these the only slides you have? If you have others, can you post them? It couldn't hurt for me to look and see if a herniation is noticed (from a non-expert and non-healthcare professional).

Take care and I pray you are able to get a correct diagnosis so you can get treatment for your daughter.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: MRI's and Skull Base??? and CSF???

Postby Sara » Sun Jun 15, 2008 7:25 am

I've heard good things about Dr Lazareth at UCLA. I would be surprised if there is not some type of program to cover the cost of a consult. In Fl we have Children's Miracle Network which covers the cost of doctor bills for parents who can't afford it of don't have insurance. I'd call his office directly or email him and tell him your daughter has a 7 mm syrinx and the symptoms and you have no cause and no insurance. I bet they have some type of program to help.
http://www.uclahealth.org/body.cfm?id=4 ... N=72925767

Oro doesn't see pediatrics.
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Re: MRI's and Skull Base??? and CSF???

Postby youngwife » Fri Jul 11, 2008 1:25 am

Just wanted to say that Dr. Frim or his "nurse" also told me that my daughter didn't have Chairi...don't give up. I do see exactly what you are talking about. :wink:
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: MRI's and Skull Base??? and CSF???

Postby JenandLuli » Fri Jul 11, 2008 2:28 am

thank you for your encouragment. we have a 2nd opinion appt next week with dr. mccomb at chla. i am anxious to hear what he has to say. i also read my dd's latest report and found out she has a cyst in her brain. the drs never told me about it and they have known since she was 11mo old! i do not know what this means yet. i am waiting to see what the dr outside kaiser says.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: MRI's and Skull Base??? and CSF???

Postby youngwife » Fri Jul 11, 2008 10:55 am

Jen,
I hope this appointment goes well. IF not, let me know if you would like the name of a ped ns in Texas that can recognize Chiari Zero. There aren't many that can, but I hope the doctor your seeing is one of them. :wink:
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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