Chiari Malformation

Posted by nsaira @nsaira, Jul 7, 2011

Hi,

I just got diagnosed with Chiari Malformation type 1. I get severe headaches if I do anything strenuous. Liked to know someone with my syptoms and how you are all handling it?

Thank you,
Naureen

@radtex

Just posted a discussion asking for info especially post op. Feel free to share the good the bad and the ugly part of recuperation especially what to expect in the pain department. I am considering going to AZ for another opinion and check out surgeons at Mayo. Not sure what city they are located in Tuscon or Phoenix. Have pain will travel !

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Texas has Dr Richard Jackson he is a chiari specilist

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Hi Naureen I also have Chiari type 1. After being prescribed numerous different medications to alieviate pain I found the taking 3 magnesium pills a day has pretty much eliminated my headaches. I would talk to your doctor before taking it, but it has def helped me.

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@elizabethrice

For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.

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I want to know this also.

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@elizabethrice

For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.

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Which location
treats Chiari. Does Jacksonville do posterior decompression surgery

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@elizabethrice

For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.

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Yes, all three Mayo Clinic campuses offer this surgery for chiari malformation in adults. Chiari malformation in children is also treated at the Mayo Clinic location in Rochester, Minn. Click on the button above if you’d like to request an appointment. Thanks.

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@elizabethrice

For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.

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Neurosurgeons at the Mayo Clinic campus in Jacksonville, FL perform 20-25+ posterior foramen magnum decompression surgeries for chiari malformation each year.

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@elizabethrice

For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.

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Can you tell me the Doctors names that do the surgery. I saw Reimer but need to wait I am only 6mm. I need a Chiari neuroligst for maintiance

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I am 46 years old I was diagnosed in January 2013,with a mass on my brain stem it was 5centimeters I am now legally blind and because we live in such a rural area no one wants to do my surgery the mass is now 9mms I have lost all rom and 100 percent incontinence im scared I am also on ssd so I really need some help I want to go to the mayo clinic in Jacksonville, Florida I live in Florida and Jacksonville is only 3 hrs away some one please help me I am so tired living this way

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@kelly_68

I am 46 years old I was diagnosed in January 2013,with a mass on my brain stem it was 5centimeters I am now legally blind and because we live in such a rural area no one wants to do my surgery the mass is now 9mms I have lost all rom and 100 percent incontinence im scared I am also on ssd so I really need some help I want to go to the mayo clinic in Jacksonville, Florida I live in Florida and Jacksonville is only 3 hrs away some one please help me I am so tired living this way

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my sister had a similar circumstance, it was in spinal column at base of brain with a 50 50 chance to do surgery or not and survive doctors went in and successfully removed it, that was 5 yrs ago

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Hi Naureen, I know what you are going through and I really wish I could tell you how I am handling this but I can’t I really

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Naureen,I didn’t get to finish my post to you,anyhow I was saying I can’t really tell you how I am handling this because I looking for answers my self hopefully we will find the answers together I have faith that someone will see our post and touch there hearts and help

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