RE: [CCIparents] NCC/ Why I started CCI

[Guest guest]

I wasn't going to send that yet, I'm tired and going to bed, I will write

more tomorrow. Sorry about that

Kathleen

[CCIparents] NCC/ Why I started CCI

Hi Everyone,

I've read on blogs and comment sections in a NY paper where people seem to

misunderstand what I want for our support group. Sally and I tried to put

together a mission when we first started the group in 2007. Sally and I had

been moderators for WACMA for several years when we decided we wanted to

discuss more about the other illness' that can accompany chiari.

At no time did either Sally or I accept any funding from anyone, doctor or

otherwise. I have personally given names of several doctors, primarily

chiari specialists to our members. I give our members my opinion. I am a TCI

patient, and I am very happy with what I have had done. Yes, I still have

symptoms, but I know there isn't a cure.

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/