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13 yr old was just diagnosed


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Old 03-26-2009, 11:03 AM   #1
scapo22
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13 yr old was just diagnosed

I am so confused. The neuro told me that she has chiari but couldn't tell me to what degree because he couldn't measure it on the program that the MRI was on. I called the Chiari Institute in NY and they want me to mail records to them. I am scared because we cannot afford any of this and I don't know what to do. The MRI she just had was $4500 and we borrowed that,,,is there any foundation or charity that will help me?

 
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Old 03-27-2009, 01:45 PM   #2
prtybleys
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Smile Re: 13 yr old was just diagnosed

Quote:
Originally Posted by scapo22 View Post
I am so confused. The neuro told me that she has chiari but couldn't tell me to what degree because he couldn't measure it on the program that the MRI was on. I called the Chiari Institute in NY and they want me to mail records to them. I am scared because we cannot afford any of this and I don't know what to do. The MRI she just had was $4500 and we borrowed that,,,is there any foundation or charity that will help me?
I don't know about that, I am 54 years old and had chiari malformation surgery about 5 years ago. I had a complete recovery and mine was bad, it took 1 1/2 years just to get diagnosed. I ended up having to file Chapter13 bankruptcy because I didn't have help insurance at the time. I would think that one of the Childrens Hospitals would be able to help you. Good Luck and God Bless you and your little one.

 
Old 03-27-2009, 06:26 PM   #3
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Re: 13 yr old was just diagnosed

The neurologist may not have access to the original films, but the neuroradiologist should, and the neuroradiologist should be able to make the measurement if there is a Chiari present.

 
Old 03-30-2009, 06:24 AM   #4
scapo22
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Re: 13 yr old was just diagnosed

I am sending all her records and mri film to the Chiari inst. in great neck LI and I will see what they say.

 
Old 03-30-2009, 09:16 AM   #5
bethsheba
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Re: 13 yr old was just diagnosed

Scapo,

What symptoms is your daughter presenting with? I wouldn't assume chiari until I had thoroughly investigated other possibilities...especially given the age of your child. Other treatable/curable conditions can present similar to chiari...but are often overlooked because chiari doctors/institutes are experts in their fields and not experts in other fields in which there are similar symptoms.

Last edited by bethsheba; 03-30-2009 at 10:07 AM.

 
Old 04-02-2009, 10:49 PM   #6
d444
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Re: 13 yr old was just diagnosed

i heard there is a charity called THON that helps families of kids with cancer. i heard they do not turn people away for cancer i dont know about other conditions, may be worth a try. i think its thon.org

 
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