News (Last updated July 30, 2006)

I haven't updated much. I'm not completely sure what to say, except that we're not done & there isn't a firm what is next. I'm trying to figure out getting back to New York for more testing, more scans, etc. Seems I have a tethered cord and some other things still going on. My brain is sitting lower in my skull than it was before surgery. Really the best way to keep up (which is spordic as well) is to read my blog.


October 28, 2005-

So here we are. Bam boom six months down the road from surgery. I'm leaving for TCI on Wednesday. I'll tell you all about it when it happens.


Hi all-

I just got my 3 month cervical spine xrays done! You can check them out here


5/17/2005

I've survived surgery and we're on the way back to Oakland today. Continue to look for updates on the blog page.
Surgery went fine for the most part, I'll write more soon. In the mean time here are some photos.
(Please note they are not necessarily prime viewing for the squeamish.)

If you were looking forward to sending flowers and didn't get to cuz I was stuck in ICU all but the last 2 days, I'm going to be recovering at home all summer, so you can always send flowers to enjoy at the house...or send/bring by vegetable plants and flowers for peops to plant in the yard as well. I have to admit I was pretty bummed out about not having flowers for most of my hospital stay.


I'm distressed to be at the point to be adding this here, but as it is 5am and I've been up all night trying to juggle the finances... We'll hopefully be sorting ourselves out this summer to get in a less precarious position, but right now with the multiple trips for medical care, uncovered expenses, and lost work time for Eliot...I don't know what else to do but put it out there. We could really use some help financially. This is the best chance for improvement in my health there has been in 10 years and it is stressful to watch our debts mount right now. If you can help out, we'd appreciate it more than I can say.

Here's a paypal link for donations. (They allow you to transfer from your bank account or credit card.)

Or you can send a check to Kriss De Jong, 2201 Curtis St. Oakland, CA 94607

If you would prefer to buy artwork, please contact us...that would be great too! killerbanshee AT killerbanshee DOT com

Thanks.


Old Notes:

Kriss is scheduled for surgery on May 5, 2005. Surgery will start 7.30am EDT and last 4-6 hours.

The hospital stay is expected to last 6-8 days or so.

This will be a 'hybrid' surgery. It will consist of craniocervical fusion (c1-c4 being fused together and to my skull) & posterior fossa decompression (cutting away part of my skull to relieve the crowding of my cerebellum/tonsils etc). It is expected to relieve a lot of symptoms.

Surgery will be at:

North Shore Hospital (Long Island Jewish Health System)
300 Community Dr., 3 Levitt
Manhasset, NY 11030

(516) 562-0100


Kriss will not be able to use her mobile phone in the hospital. If you need/want to call her directly call the above number and ask for her room...pls be understanding that she'll have just had brain surgery and might not be up for calls. Otherwise you can call the main Killer Banshee # (510.444.2649) or Eliot's mobile phone directly (which is the same as Kriss' but ends in a 6 instead of a 0).

Eliot will try to post an update here after surgery.

The current diagnoses from the neurosurgeon at The Chiari Institute is: Variant of Chiari I Malformation, functional cranial settling, Ehlers-Danlos syndrome and possible chronically raised intracranial pressure.

 


Links to photos & images of Kriss

3 Month Cervical Spine Xrays (added 07/30/05) Make sure to go to the side view page...shows a before & after xray side by side.

Post surgery photos

3D CT Scans

Invasive Traction - Head Tongs application

Fly PEOP of Kriss in head tongs

AJ piece of Kriss in head tongs

Links to info about Kriss

Blog (stuff about medical thangs...thoughts & info)

Other stuff about surgery

First Note (pre-NY visit)

Second Note (after first NY appointment)

Current Info (it was current when I put it up)

Travel Calendar

Links to general info about different info files

There is a lot of info here, cuz it isn't straight forward any of this, especially when you are coming from a point of never even having heard of any of it.

Instability of the Craniocervical Junction

Chiari Malformations

Ehlers-Danlos Syndrome (EDS)

Noonan's Syndrome

The Chiari Institute