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There are currently 11 messages.
There have been 981 visits since 2010-05-19
This page was last accessed on 2024-04-06
| Message Number: 11 - Private Message |
Message Number: 10 -
Sunday, September 9, 2012 18:47:51 PDT
[IP = 107.8.93.248] -
Posted From: united states of america
| Name: | Linn Ash |
| Do you have Chiari Malformation?: | yes |
| Have you had Surgery?: | C1,2 fusion |
Comments:
this blog was at the top of my search! the message is getting out here..
We have Ehlers Danlos Syndrome. and chiari. My dtr also has platybasia, kinking of the brain stem. So far, we are waiting to have her surgery- we know there are many complications.I am facing more surgeries too.
My heart goes out to Kelly's family.
Please keep sharing the information.
Thank you! |
Message Number: 9 -
Sunday, April 22, 2012 22:31:13 PDT
[IP = 203.109.202.13] -
Posted From: new zealand
| Name: | Stephanie |
| Do you have Chiari Malformation?: | Yes 12mm |
| Have you had Surgery?: | No not yet - still waiting to have MRI and see the Surgeon |
Comments:
Hi I'm 39 yrs and live in Auckland NZ. I just been diagnose that I have Chiari and want that now means.
Like all the stories I have read I have suffered through headaches and tiredness for many years. I just thought I was being old and lazy and imagining things.
Now I know that's not the reason and I am looking forward with some trepidation to having decompression surgery sometime this year.
There isn't much information on Chiari in NZ and I have searched the net in my spare time to research it.
I have to say that knowing there are young children and young adults living with such severity is heart wrenching.
I am so glad there are people out there who care so much and give their time to make their dreams a reality. These people are an inspiration.
My life is really not so bad when I compare it to theirs and I am thankful for what I have and have achieved and for my family each day. |
| Message Number: 8 - Private Message |
Message Number: 7 -
Monday, October 11, 2010 22:09:09 PDT
[IP = 66.82.9.79] -
Posted From: united states of america
| Name: | Stacie |
| Do you have Chiari Malformation?: | Yes |
| Have you had Surgery?: | No |
Comments:
I have just recently found out I have a Chiari 1 malformation. Going soon for cine MRI to check CSF flow.
|
Message Number: 6 -
Sunday, August 29, 2010 13:25:25 PDT
[IP = 67.55.178.174] -
Posted From: united states of america
| Name: | rm |
| Do you have Chiari Malformation?: | yes |
| Have you had Surgery?: | yes |
Comments:
read your story . it will get better . |
Message Number: 5 -
Wednesday, July 28, 2010 20:38:23 PDT
[IP = 67.168.101.134] -
Posted From: united states of america
| Name: | kathy donohoe |
| Do you have Chiari Malformation?: | yes |
| Have you had Surgery?: | yes, my second one was just 10 days ago |
Comments:
Hi there. I understand Chiari Malformation. I've just had my second surgery. The first one was four years ago. My second one was 16JULY and I had hardware removed. It's not fun being Chiarian.
I found your blog by accident, but I know now, nothing is an accident.
I wish nothing but the best for your son. It's heartbreaking when it's our children, we want to take away all pain.
Be tenacious. Be aware. Be educated.
Be loving and caring.
Be well.
Bright blessings,
Kathy |
| Message Number: 4 - Private Message |
Message Number: 3 -
Tuesday, June 8, 2010 13:23:36 PDT
[IP = 24.102.131.238] -
Posted From: united states of america
| Name: | Selma |
| Do you have Chiari Malformation?: | yes |
| Have you had Surgery?: | yes |
Comments:
dx with chiari and tethered cord Feb. '08
PFD May 28th '09
waiting on TC release and disk fusion. |
Message Number: 2 -
Wednesday, May 19, 2010 15:47:26 PDT
[IP = 212.129.68.244] -
Posted From: ireland
| Name: | Ray |
| Do you have Chiari Malformation?: | Yes |
| Have you had Surgery?: | No |
Comments:
DX with Chiari & Syringomyelia in 2009, I find getting a neurosurgeon with experience is the most
important "next step" after DX
Ray |
|
