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Chiari Malformation (update pg 2)

 
MissionInvisible

User ID: 27358843
United States
04/06/2013 06:56 PM
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Re: Chiari Malformation (update pg 2)
Do you have torticollis at all?
 Quoting: Anonymous Coward 26758812


What's that?



And yes to the Epsom salts with baking soda and lavender. I've been doing that!
 Quoting: Only Me


Oh good :)

I have all kinds of weird tricks up my sleeve to help with my issues.

Initial diagnosis can be very hard. It can be a blessing to finally have answers (it took a few years to diagnose my EDS), and then it can open up a whole new world of worries.

I would just take a deep breathe and know there is all kinds of information/support groups out there :) You are definitely not alone.
"So you're made of detritus [from exploded stars]. Get over it. Or better yet...Celebrate it. After all, what nobler thought can one cherish than that the universe lives within us all?"

Neil deGrasse Tyson



"We were told that the changes in our world would become the catalyst for ones within us..."
Fractal Time, Gregg Braden
Anonymous Coward
User ID: 26758812
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04/06/2013 06:56 PM
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Re: Chiari Malformation (update pg 2)
Do you have torticollis at all?
 Quoting: Anonymous Coward 26758812


What's that?



And yes to the Epsom salts with baking soda and lavender. I've been doing that!
 Quoting: Only Me


Does your neck have a tilt towards right or left? Also, what is your vision like? Near-sighted?
MissionInvisible

User ID: 27358843
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04/06/2013 06:57 PM
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Re: Chiari Malformation (update pg 2)
...


Definitely get some second opinions. I saw doctor after doctor with my issues.

Chiari is sometimes seen with scolisis and tethered cord syndrome. If you have tethered cord syndrome, the tethered cord release can help with pulling down on your neck...or if you have syringomyelia along with the chiari they can do some things to take the pressure off. I am not trying to scare you by listing off all these things, its just sometimes symptoms can mimic each other.
 Quoting: MissionInvisible


My friend's daughter had the syringomyelia (cyst in the spine) but it was caused by the Chiari. The surgery resolved that as well.

A good neurologist would rule out tethered cord on MRI.
 Quoting: Anonymous Coward 18150467


bleh scan after scan after scan. Its good to see all the various angles though!
 Quoting: MissionInvisible


Actually it was ONE scan that caught all of it. I was there, and it wasn't nearly as frightening as you are making it out to be. The OP just needs an opinion from a neurologist with experience with this specific condition.
 Quoting: Anonymous Coward 18150467



Not trying to scare the OP at all
"So you're made of detritus [from exploded stars]. Get over it. Or better yet...Celebrate it. After all, what nobler thought can one cherish than that the universe lives within us all?"

Neil deGrasse Tyson



"We were told that the changes in our world would become the catalyst for ones within us..."
Fractal Time, Gregg Braden
Anonymous Coward
User ID: 36181685
United States
04/06/2013 07:01 PM
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Re: Chiari Malformation (update pg 2)
I knew you were a little off balance...

wink

You feeling okay though?
 Quoting: ArunaLuna


And Lmao at me being off balance. I am a little off :-p
 Quoting: Only Me


:awwtree:
Only Me (OP)
Strawberry Girl

User ID: 34792354
United States
04/06/2013 07:14 PM

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Re: Chiari Malformation (update pg 2)
Yes my neck has always tilted a little to the left. I have peripheral vision loss that I was blaming on sinus surgery ....

I was blaming all of it on that surgery but apparently it's not the case....it only kicked the progression of the problems into high gear.

If I could just stop the dizziness and fainting, I think I'd be just fine trying to live with it. Well...and the brainfog.

I feel like I see the world in Technicolor - that's what it feels like.
Here is where I look back.
Here is where you fell.
This is where I got up,
Shaking off my tail
This is where your rope trick
Started to look stale.
A greyhound pass for the boy in the well.

Anonymous Coward
User ID: 36181685
United States
04/06/2013 07:15 PM
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Re: Chiari Malformation (update pg 2)
Sounds like an acid trip! And not the fun kind...
Only Me (OP)
Strawberry Girl

User ID: 34792354
United States
04/06/2013 07:15 PM

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Re: Chiari Malformation (update pg 2)
Do you have torticollis at all?
 Quoting: Anonymous Coward 26758812


What's that?



And yes to the Epsom salts with baking soda and lavender. I've been doing that!
 Quoting: Only Me


Oh good :)

I have all kinds of weird tricks up my sleeve to help with my issues.

Initial diagnosis can be very hard. It can be a blessing to finally have answers (it took a few years to diagnose my EDS), and then it can open up a whole new world of worries.

I would just take a deep breathe and know there is all kinds of information/support groups out there :) You are definitely not alone.
 Quoting: MissionInvisible


I'm going to join that chiari support group the anonymous poster linked.

And you didn't scare me. I have scared myself! Lololol
Here is where I look back.
Here is where you fell.
This is where I got up,
Shaking off my tail
This is where your rope trick
Started to look stale.
A greyhound pass for the boy in the well.

Only Me (OP)
Strawberry Girl

User ID: 34792354
United States
04/06/2013 07:16 PM

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Re: Chiari Malformation (update pg 2)
Sounds like an acid trip! And not the fun kind...
 Quoting: ArunaLuna


Hah in a way! Nothing's real...but it is....or is it.....hrmmmmm
Here is where I look back.
Here is where you fell.
This is where I got up,
Shaking off my tail
This is where your rope trick
Started to look stale.
A greyhound pass for the boy in the well.

Only Me (OP)
Strawberry Girl

User ID: 34792354
United States
04/28/2013 09:34 PM

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Re: Chiari Malformation (update pg 2)
On top of the chiari bullshit, it turns out I have a csf leak through my nose from the sinus surgery. That's what's causing the majority my symptoms. I'm off work for awhile to get it all fixed, so get ready for LOTS of Only Me on GLP.

...sorry guys
Here is where I look back.
Here is where you fell.
This is where I got up,
Shaking off my tail
This is where your rope trick
Started to look stale.
A greyhound pass for the boy in the well.

lou la belle
User ID: 2328655
United States
08/27/2014 06:59 PM
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Re: Chiari Malformation (update pg 2)
be well. sending out prayers. It sounds like you are doing all the right things.

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