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TOPIC TITLE: Chiari
Created On 1/1/05 9:49 PM
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smileyface136
Junior Supporter

Posts: 7
Joined: Jan 2005

1/1/05 9:49 PM
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Hi. My husband has a rare chronic illness called Arnold Chiari Malformation. I am looking for other frum people with this disease.


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Michele Moskowitz

To learn more please go to www.asap.org
 
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g
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Posts: 25
Joined: Jan 2005

2/22/05 10:25 AM
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Hi,
If I am not mistaken, I believe that Chiari malformations are disorders related to Agenesis (or dysgenesis) of the Corpus Callosum. This is usually detected through an MRI of the brain. Does your husband have ACC as well? There are quite a few frum individuals with ACC and related disorders.
 
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smileyface136
Junior Supporter

Posts: 7
Joined: Jan 2005

2/22/05 6:54 PM
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G,
I am thrilled that you replied to my post. I will give you the definition of Chiari as it is written in a medical glossary I have. Arnold Chiari Malformation (CM or ACM) Is a herniation of the brainstem and lower cerebellum through the foramen magnum into the cervical vertabral canal.

Did that clear it up at all for you? His doctors have never mentioned his CC. I do know someone on the Chiari listserv who's daughter has what you spoke about. Let me know if you are interested in talking to him. I don't know if this matters to you...... but he is not Jewish. THe frum people you know with ACC, are they in a support group? I would really love to find out if any of them have chiari too. So far I have met ONE frum person in NY with chiari. Actually, I only know of a few Jews with chiari. We live in Philly, but our Dr is in NY. We will be in NY on March 1 for my husband to have surgery.

Again, thanks for answering my post!!!!


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Michele Moskowitz

To learn more please go to www.asap.org
 
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ykb
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Posts: 362
Joined: Feb 2006

5/14/06 3:04 PM
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Have you checked out the web site www.chiari.com? I found out about it through a support group that I joined for a rare neurological disease that I have pseudotumor cerebri. The founder of the support group also has chiari malformation and found that this website had a lot of information and was very helpful. Refuah Shleimah to your husband.
 
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FORUMS > Neurology > General (Neurology) < Refresh >

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