NCC/ Slow list

January 2, 2008

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

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.

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