A Good Chiari Story

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Post  Anna's Mom on Tue Dec 15, 2009 10:33 am

A North Dakota's woman's successful Chiari story:

http://www.minotdailynews.com/page/content.detail/id/534877.html

Our G.P.'s nurse was recently diagnosed with Chiari/Syringomyelia. Which came as quite a shock to her. She is having decompression surgery in January. She didn't even know what it was when she told Anna's G.P. He said, "That is what Anna has." I'm sure she thought, "Oh no!"

Hopefully she will have a good outcome, like this North Dakota woman did.

Cheryl
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Post  tecky on Tue Dec 15, 2009 12:47 pm

Thanks for sharing that, Cheryl. It's nice to see someone have a happy ending to their chronic migraines.

Bless you,

Becky
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Post  30yrsofheadache on Wed Dec 16, 2009 4:40 am

Hi, Cheryl. I finally got an OK for Zoe to have an MRI, with and without contrast. They did not approve the MRA. I am very nervous about her MRI showing Chiari. I cant really talk about it to anyone else. I dont want to scare Zoe, and my husband would think I am looking for trouble! I am sorry that Anna did not get any help with the monitering. You must be so discouraged. There is nothing worse than seeing your child in pain and not being able to help! It is good to hear a story with a good ending-thanks for posting it.
Hugs,
Cindy
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Post  tecky on Wed Dec 16, 2009 7:18 am

Cindy,

I'm keeping you and Zoe in my prayers.

Take care,

Becky
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Post  Anna's Mom on Wed Dec 16, 2009 8:42 am

Cindy, I'm sorry for you and for Zoe. I know you want an answer for her HA's. Let us know the results, OK?

I'll be getting the report of the ICP monitoring and the averages for each day. And I'll be forwarding it to our neuroradiologist at Duke. Had she found pressure under 20 in her LP of Anna in June, she would have done a dynamic CT myelogram to look for CSF leaks (Anna's pressure turned out to be 26). So now Anna has pressures under 20 (even as low as 7 while laying pretty flat), and I don't know what to make of it!

Frustrating, as always.

Cheryl
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Post  30yrsofheadache on Thu Dec 17, 2009 4:41 am

Thanks Becky and Cheryl. I will let you know what happens. The MRI is at the end of the month, but we dont see the Neuro until mid-January. In the meantime, I am taking her to my Dr. She is a Lyme disease specialist, but started in family practice. She is the best at figuring out complicated cases. I hope she has some ideas.
Hugs,
Cindy
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