Chiari support group meeting at Criolla's

[Fifth Sista]

Hello everyone, our son Jonathan has been diagnosed with a rare brain abnomality called Arnold Chiari Malformation He had brain surgery Dec 21 2006. We have learned a lot about this disease and have started a support group . The first meeting will be Saterday Jan.26th from noon till 2:00pm.

I've already had a great response from some Chiari families through out the south. Please help us spread the Chiari Word and find a cure.

Lets find a cure!
Debbie

 

[Bobby J]

Sure will help spread the word Deb!!!!!

 

[LightWorker]

Hello everyone, our son Jonathan has been diagnosed with a rare brain abnomality called Arnold Chiari Malformation He had brain surgery Dec 21 2006. We have learned a lot about this disease and have started a support group . The first meeting will be Saterday Jan.26th from noon till 2:00pm.

I've already had a great response from some Chiari families through out the south. Please help us spread the Chiari Word and find a cure.

Lets find a cure!
Debbie

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[Bobby J]

Hello everyone, our son Jonathan has been diagnosed with a rare brain abnomality called Arnold Chiari Malformation He had brain surgery Dec 21 2006. We have learned a lot about this disease and have started a support group . The first meeting will be Saterday Jan.26th from noon till 2:00pm.

I've already had a great response from some Chiari families through out the south. Please help us spread the Chiari Word and find a cure.

Lets find a cure!
Debbie

I was wondering if you could explain a little more about this. Thanks,

 

[Fifth Sista]

Hey Bobby,

This is basically the definition of Chiari.
Chiari malformation(CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.

There are too many symptoms to even write down. They have discovered a strong connection between Ehlers-Danlos syndrome ( connective tissue disease) and Chiari. The Chiari Institute in Great Neck NY (google it) they have an incredible site on Chiari. The other site is ASAP.org another great info site.

Bobby when you and Ed came by the night before we left for UAB for surgery and SHAVED YOUR HEADS to show your support for Jonathan we will never forget that. Your hair did grow back!!! HEEE HEEE HEEE!! Thanks for asking for more info. It's a lot to try to understand and we are still learning.
Take care,
Debbie

 

[Bobby J]

Thanks for the info! My hair did grow back! Thank the lord for that. I will google some of this info. Great to know Johnathan is doing better. I am sure we will talk soon. Did they not have a show on Extreme Makeover about this condition?

 

[Fifth Sista]

Hey Bobby,

Yes they did have that show a couple of wks ago. It was unreal the mother and all 3 daughters have Chiari and Jonathan has talked with them already. We take Jonathan back up to NY in 3 wks so we will keep you posted .

Take care,
Debbie

 

[Bobby J]

Hey Bobby,

Yes they did have that show a couple of wks ago. It was unreal the mother and all 3 daughters have Chiari and Jonathan has talked with them already. We take Jonathan back up to NY in 3 wks so we will keep you posted .

Take care,
Debbie

Please do.

 

[Grayton Girl]

Hello My Sista:

I think it is wonderful what you are doing. I hope your group can help the world better understand this condition and its treatment. And may there be a cure soon!

And.... I love your screen name.

Second Sista

 

[Fifth Sista]

Hey i'm glad you like the name. When you asked me the other day i had a brain freeze!! Love the picture!! Yes i'm looking forward to the meetings.

Love ya sista!!!