Re: NCC/ Slow list----Correction and Additions

[Guest guest]

Just a small correction to this post. The moderators are the only ones who can

add stuff to the calendar. So, please send a email to the moderators at:

-owner and we will be glad to add

your event, chat, etc. Ongoing events or chats can also be added and are

encouraged.

We are doing some exciting things this year on the website so that you will have

more information and resources. One of them I asked the list about was the

" Medical/RX Assistance " section. I did get 2 links but we need much more. Please

send me any link you think would be of importance. It can be the most obvious

link there (like the American Red Cross) but please send them in. We need your

help in a lot of aspects of the website to keep it the best chiari and other

related disorders resource website on the web.

If you have any suggestions, comments, ideas, or anything, please send them in.

Feedback and ideas from 1,000 brains is much better than 5 or so :-). The same

goes for the list, please send in any problems, ideas, etc. If you do not like

something we are doing, tell us. We will never know how to fix something if we

do not know it is broke. You can send those to us by two ways. If you want to be

anonymous, please use the " Contact Us " feature on the website. You can make up a

name and email, since those are required, and send it in. All of us will get the

message and we will have no way of knowing who it came from. If you would just

like to send it in without being anonymous, then please send it to the

moderators at: -owner .

The feedback is a very important thing to all of us, it will allow us and you to

help more people and help us know where our problems are.

We look forward to your calendar requests as well as your feedback.

NCC/ Slow list

Hi Gang,

Sorry I haven't been around much. I'm trying to answer email, but I've been

slow in the process. Our boys are home for the holidays, Nick will return to

CA on Monday and will return to school on the 14th. Boy, I forgot what

having the kids home was like! They eat constantly, along with the mess that

goes with it, there are dishes everywhere but the cupboard.

The list is really slow right now. If you don't get a response to your

questions, please post it again. If you still don't get a response, write

the list managers, let us know what you need.

I've seen lots of support group meetings going on. We have a calendar on our

website that you can put the meetings on with information about them

http://www.chiariconnectioninternational.com/WebCalendar/month.php

Check out the website, is always making changes. We will be working on

new things the first of this year to update the site as well. If you have

any ideas, please let us know.

On a personal note, I'll be headed to surgery within the next couple of

months. I have a couple of personal emails asking about what life is like in

a halo because they will need halo's with their upcoming fusion. I will get

my halo hints out right away to those that need it. I had a halo in 1999 for

my first fusion, and I opted to go with the halo prior to surgery this time

because my symptoms weren't controlled by the CTO. Other than pin

infections, I've had relief of symptoms and it's been well worth having in

on again. For those that will need a halo in the future, let me know and

I'll send you my experience and hints. If I get enough questions, we'll put

info on the web site.

Happy New Year to everyone, lets start communicating again now that the

holidays are over with.

Kathleen

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

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

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/