Trying to understand

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

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Trying to understand

Postby AtTheWatersEdge » Sat Aug 29, 2009 10:29 am

Some background: My son will be 3 in October. He was Diagnosed with autism at age 1. He is nonverbal and recently diagnosed with a seizure disorder. He was scheduled to have a CT scan (for another problem), and since it would require sedation for that we decided to get the MRI of his brain at the same time.

Tests were done this past Wednesday, and I got the report on Friday. I am hoping that some of you will be able to help me interpret the report.

Findings: There is a Chiari 1 malformation. The cerebellar tonsils protrude 11mm below the foramen magnum. On the CSF flow images there is diminished circulation posterior to the cervical cord and in the posterior fossa. Normal circulation is seen anterior to the brainstem and cervical cord. There is no evidence of a syrinx in the cervical cord.

I have been reading as much as I can about the Chiari 1.

Does anyone know if that 11mm is considered a small "protrusion"? Is it okay that he has diminished circulation at all? And since there is no syrinx in the cervical cord, is it unlikely that there is one anywhere else?

Thanks in advance for any assistance

Monica
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Re: Trying to understand

Postby jupes » Sun Aug 30, 2009 8:50 am

Hi Monica and welcome!

I would say 11mm is a good size herniation. Size of herniation isn't as important as the diminished csf flow. Some people with very small herniation have bad symptoms and lack of csf flow while others with large herniation can be asymptomatic. My DD has no herniation just "crowding" and has symptoms and a syrinx.

Usually when chiari is discovered, an MRI of the entire spine is done since a syrinx can also show up in the thoracic cord. Lumbar spine is done to rule out other associated conditions such as tethered cord.

Educating yourself is one of the best things you can do to help your son. It is also important to make sure your son is seeing a NS who is considered a CM/SM expert. Many of us have had to seek second and 3rd opinions and even travel to find a good expert!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Trying to understand

Postby AtTheWatersEdge » Sun Aug 30, 2009 2:31 pm

I think I'm still a little in shock.

We've been looking for reasons why he won't eat food and acts like he is pain (we thought the pain was a GI issue) for 2 years now. I've had to push a lot of drs. even to do tests.

I am in Ohio. I have Cleveland Clinic, Rainbow Babies, Childrens Hospital of Pittsburgh, and Cincinnati is about 5 hours away (I'm used to driving all over for him.)

I think someone on the board recommended a Dr. Spinks in Pittsburgh (which isn't far away).

Thank you for your reply.

I like the verse on your signature. :)

Monica
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Re: Trying to understand

Postby Sara » Sun Aug 30, 2009 3:11 pm

Welcome to ASAP. I'm sorry your son has an additional diagnosis to worry about. Please read this article for more information on Chiari in young children: http://www.asap.org/articles/102-1.html

A syrinx can actually be present in any part of the spine, but the cervical is by far the most common especially with a Chiari. The size of the herniation is less of a concern- some people have very large herniations with no symptoms, some have minimal with many symptoms. The compression on the neural tissue and other factors seem to be more important.

Dr. Mark Luciano at Cleveland Clinic has a very good reputation. You might like to make an appointment to see him.

Let us know if you have any questions that come up. Order a free info packet from ASAP if you haven't already. Ther is also a video on kids with CM/SM you can watch on line: http://www.asap.org/media/videos-2008/keating.html
Sara
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Re: Trying to understand

Postby AtTheWatersEdge » Sun Aug 30, 2009 6:21 pm

Staying in state would be easier for me.

I plan on calling Monday.

Thanks for the recommendation and the article (it was helpful).

Monica
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Re: Trying to understand

Postby AtTheWatersEdge » Wed Sep 02, 2009 6:02 am

Have an apptmt with Dr. Luciano week of Thanksgiving. But we are also on his cancelation list...a lot of people are praying that we get in sooner.

I am glad we got the dr. we were wanting.

Monica
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Re: Trying to understand

Postby jupes » Thu Sep 03, 2009 8:38 am

Monica,
Glad you found an expert closer to home. Pray all goes well with the appt. and there is a cancellation so he can be seen sooner!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
Posts: 262
Joined: Fri Jan 09, 2009 2:37 am


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