northern california support group

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northern california support group

Postby aprtravis » Thu Mar 15, 2012 4:23 pm

I was wondering if there are members in the No Cal area who would like to start a chiari/syringomyelia group. Online has been a lifesaver but sometimes the personal face to face is necessary. More for validation. I am still fighting the good fight. changed health plans and diagnosed with pseudotumor cerebri and papilledema along with chiari 7mm. There needs to be awareness and advocacy for this disabiling and painful condition and several minds and ideas are better than one in northern california.
7mm chiari malformation
cervical scoliosis
t2 hemangioma
c3-7 herniation (herniations seem to be growing without trauma)
recently diagnosed with elevated intracranial pressure and papilledema
aprtravis
 
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Re: northern california support group

Postby Jazzzzmyne » Mon Mar 26, 2012 2:16 pm

Greeetings! I'm interested in a support group up here in Northern CA! I'm in the Bay Area, about 15 minutes from SF. Also, for the first time ever, I chatted on the phone with another individual with syringomyelia who lives in the Bay area. Just sharing our experiences indeed is some comfort. I've had ACM and syringomyelia for over 25 years. I consider myself lucky--I've figured out appropriate adjustments to avoid pain, though I have flareups. But it still is very frustrating when I try to explain my condition to others. So once again, I'd like to form a support group here.
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Re: northern california support group

Postby razzle » Mon Mar 26, 2012 4:06 pm

this gal wants to start one too

Northern CA
Contact: Jacqueline
jacquelinehuggitt@ymail.com
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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razzle
 
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