6 year old daughter diagnosed with CM1 and SM

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

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6 year old daughter diagnosed with CM1 and SM

Postby Avesmom » Mon Oct 29, 2007 3:26 pm

Hello Everyone,
This is my first time visiting the site. It is comforting to see others are in the same boat but also scary to read the stories and hear of the pain some people are suffering. My dauther, Avery, started complaining this past June of "odd" symptoms after going on a ride at a birthday party. She was telling us that she felt like she was swaying back and forth and that her arms and legs were waving around. After visiting several different doctors and being told there was nothing seriously wrong with our daughter, I became pretty persistent that something was wrong and convinced our pediatrician to order an MRI. We had our first MRI which showed she had Chiari 1(cerebellar tonsils herniated 1.8cm below the foramen magnum). Next we had the MRI of the spine which showed a syrinx in two areas (T5-T6 measuring 1mmin dimension and T7 - T8 measuring 2.2mm). We are now under the care of Dr. Frim at UIC and have been extremely confident in him and his staff. Avery is scheduled for decompression surgery on December 5th :cry: . We are nervous and anxious about the procedure. We know it is needed and hope it will improve her symptoms but are having a hard time believing this is actually happening right now. I would appreciate any feedback from those who have been through the procedure with a young child (Avery just turned 6 on October 11th). This has been very stressful for my husband and I and we welcome any words of advice!!
Avery's Mom
Posts: 5
Joined: Mon Oct 29, 2007 2:34 pm

Postby brianfsmom » Mon Oct 29, 2007 7:28 pm


You're a good mom, I can tell. Your daughter is so good at describing her symptoms! I am glad you found Dr. Frim and got answers. We never met with him, but he was kind enough to email me and answer questions when we were choosing surgeons in our area three years ago.

I just wanted to say that most kids do extremely well with this surgery, better than we do as their parents, I am sure. Dr. Frim is beyond capable and although there are never guarantees with anything ... it is highly likely that your daughter will recover swiftly and you will be surprised at how quickly she returns to herself.

Best wishes! I was going to say - why so long until surgery - and then I realized December is just a little more than one month away!!!
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Joined: Thu Jul 26, 2007 2:31 pm

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