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-   -   Chiari Malformation (https://www.yorkietalk.com/forums/off-topic-discussions/110969-chiari-malformation.html)

Shadow 01-09-2008 07:51 PM
Chiari Malformation
 
My niece was just diagnosed with the brain condition, anyone else have it or have heard anything about it?

cockerduchess 01-09-2008 08:22 PM
I am so sorry to be reading this my prayers are with your family.

RoxyJosMom 01-09-2008 08:26 PM
Never heard of it, but she will definitely be in my prayers.

FL Tink 01-09-2008 08:27 PM
awww sorry. they thought my neice had it. when she was 16 she started having severe headaches esp when she would change positions.
they finally determined her body wasnt reabsorbing the spinal fluid so she had too much spinal fluid flowing around causing increased pressure in her head. they believe her condition was caused by a virus that left scars on the area of her brain that is responsible for reabsorbing the old fluid. they ended up putting a vp shunt in to drain the excess. the drain originates in the ventricles of her brain and ends in the abdominal cavity. so when the pressure is too hign it can drain off so to speak.
here is a link for more info. my neice is 25 and is living a normal life.
she just delivered her first child today!!!
http://www.ninds.nih.gov/disorders/c...ail_chiari.htm
I hope everything goes ok for your neice

Rosey07 01-09-2008 09:24 PM
I was diagnosed with Syringomyelia at the age of 38. I had surgery to drain the cyst in my spinal cord. I still walk today but have pain.

I just pray they are wrong. And have misdiagnosed her. How old is your niece?

gypsyqueen 01-09-2008 09:29 PM
So sorry
 
Like you dont have enough on your plate my prayers for your neice

Shadow 01-09-2008 09:36 PM
She is 32. I don't know if they have misdignosed her ,that is what the MRI has showed.
Quote:
Originally Posted by Rosey07 (Post 1661134)
I was diagnosed with Syringomyelia at the age of 38. I had surgery to drain the cyst in my spinal cord. I still walk today but have pain.

I just pray they are wrong. And have misdiagnosed her. How old is your niece?

Rosey07 01-10-2008 12:20 AM
I was hoping Shadow. Sorry but that is a very painful disorder. That's about all I know. Blessings sent to your niece.

Shadow 01-19-2008 07:41 PM
They usualy rate the malformation between a 1-5 hers is a 9 :eek: ...So she will be having surgey and shew is scared to death,prayers for Brandie please!

RowdysMom 01-20-2008 02:47 PM
I'm so sorry to hear this - I hope treatment is successful!

patty58 01-20-2008 02:52 PM
I will keep her in my prayers. My granddaughter was diagnosed with syringomyelia when she was 2.

PANAMA69 01-20-2008 07:19 PM
I also sending prayers:hands: :hands: :hands:

LunasMomma 01-20-2008 08:08 PM
Prayers on the way:hands:

LunasMomma 01-20-2008 08:23 PM
I don't know if this will help, but a friend from another online group has been dealing with Chiari, for a few years now, after so many misdiagnoses. Here is her blog, it might help you guys:

http://chiarian.blogspot.com/

Shadow 01-20-2008 09:50 PM
Thanks! I will pass that too her.
Quote:
Originally Posted by LunasMomma (Post 1691329)
I don't know if this will help, but a friend from another online group has been dealing with Chiari, for a few years now, after so many misdiagnoses. Here is her blog, it might help you guys:

http://chiarian.blogspot.com/

Shadow 01-23-2008 07:51 AM
So sorry Patti,how is she doing.Did she have to have surgery?
Quote:
Originally Posted by patty58 (Post 1690330)
I will keep her in my prayers. My granddaughter was diagnosed with syringomyelia when she was 2.

ARCHIE 01-23-2008 07:55 AM
Prayer's are on their way for your niece. Wishing her a successful surgery
a speedy recovery.

cj_michi 01-23-2008 10:35 AM
I have two cousins that have this the oldest has the more severe and the young girl has a mild form. I will say the oldest which is 14 going on 15 has been in and out of the hospital for the past year and a half numerous of times. He's had about I would say 50 surgeries and still counting. He makes improvement but then relapses again. My cousin had to move from Houston to Chicago so he could be treated by one of the best doctors in this matter. If you are interested I'm sure my cousin(the kids mom) is more than welcome to talk to you about this as she has became a real advocate for this. If you are interested you may PM me. I know she was keeping a blog about it I don't know if she still does. I wish your family the best as I know how difficult this illness can be and I will keep them in my prayers

patty58 01-23-2008 10:50 AM
Quote:
Originally Posted by Shadow (Post 1697778)
So sorry Patti,how is she doing.Did she have to have surgery?
She hasn't had to have surgery so far. They are so afraid the surgery will 'cause more damage. She has not had problems for a couple of years but is starting to have pain again so we are taking her to the neurologist for another MRI. She has had so many.

Shadow 02-25-2008 09:40 PM
How old is she now? I will keep her in my prayes. My niece's surgery is Scheduled for April 11.
Quote:
Originally Posted by patty58 (Post 1698303)
She hasn't had to have surgery so far. They are so afraid the surgery will 'cause more damage. She has not had problems for a couple of years but is starting to have pain again so we are taking her to the neurologist for another MRI. She has had so many.

patty58 02-26-2008 06:59 AM
Thank you so much for asking. She had her MRI and it shows that the cavity is still there...I think about one third of her spinal column is affected but now she has a bulging disc. We still can't see the neurologist until the middle of March. Pediatric neurologists are few and far between!!! even here in DFW with 2 children's hospitals.

MindieRose 02-26-2008 08:23 AM
Quote:
Originally Posted by Shadow (Post 1660976)
My niece was just diagnosed with the brain condition, anyone else have it or have heard anything about it?
Yes, my mom and brother have it. My mom had surgery to correct it, my brothers isnt as severe. I can get you whatever details you want from my mom. She had the surgery about 14 years ago now.

Little Bit 02-26-2008 09:00 AM
I don't know anything about it, but there was an episode on Extreme Makeover Home Edition that had a family dealing with this.

Your niece will be in my prayers.


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