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Chiari Malformation (update pg 2)

 
Only Me
...there is no you

User ID: 34792354
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04/04/2013 08:58 PM

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Chiari Malformation (update pg 2)
Tell me what you know about Chiari malformation. Is it something, in your opinion, that is very bad, or not terrible?

Is it a scary diagnosis?

Also...pineal gland cyst. hmmm...

Last Edited by Only Me on 04/28/2013 09:34 PM
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)
...there is no you

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04/05/2013 07:55 AM

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Re: Chiari Malformation (update pg 2)
Nobody?

:'(
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
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04/06/2013 06:17 PM
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Re: Chiari Malformation (update pg 2)
[link to www.ninds.nih.gov]

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance.
Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.

CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.

 Quoting: link
Anonymous Coward
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04/06/2013 06:18 PM
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Re: Chiari Malformation (update pg 2)
I knew you were a little off balance...

wink

You feeling okay though?
TheBiss
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04/06/2013 06:21 PM
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Re: Chiari Malformation (update pg 2)
Midichlorian count
www.TheGrainMillWF.com - Bulk foods, long term storage solutions
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Only Me (OP)
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04/06/2013 06:22 PM

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Re: Chiari Malformation (update pg 2)
A ballerina with balance issues. Pffft!!!

I'm not doing very well actually. Most people who have it show no symptoms or very few vague symptoms. I can think back over the years and think of some things that fit.

It usually starts showing up when someone has some sort of facial or head trauma. I had sinus surgery a few months ago so that must be what started it. I've been stumbling around in a fog, severe headaches, passing out....it's really a crappy crappy thing to have.

Only one way to fix it too. Fucking brain surgery.
omaward
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)
...there is no you

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04/06/2013 06:23 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
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)
...there is no you

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04/06/2013 06:25 PM

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Re: Chiari Malformation (update pg 2)
Midichlorian count
 Quoting: TheBiss


I'm a Jedi? Is that because my brain is too big for my skull? ****giggle****
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
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04/06/2013 06:28 PM
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Re: Chiari Malformation (update pg 2)
I know a person who has it.

They had it since birth, or the parents were aware of it right away. Lots of balance and turning issues, maybe it is different if you have it very early on.
Good luck to you and get someone who has dealt with it frequently to help you decide what to do.
Anonymous Coward
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04/06/2013 06:29 PM
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Re: Chiari Malformation (update pg 2)
My friend's daughter had surgery for this, the recovery was difficult for a few weeks (headaches), but aside from a scar you'd never know she had it done.
MissionInvisible

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04/06/2013 06:31 PM
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Re: Chiari Malformation (update pg 2)
A ballerina with balance issues. Pffft!!!

I'm not doing very well actually. Most people who have it show no symptoms or very few vague symptoms. I can think back over the years and think of some things that fit.

It usually starts showing up when someone has some sort of facial or head trauma. I had sinus surgery a few months ago so that must be what started it. I've been stumbling around in a fog, severe headaches, passing out....it's really a crappy crappy thing to have.

Only one way to fix it too. Fucking brain surgery.
omaward
 Quoting: Only Me


I am pretty familiar with it actually. I went through a long phase with my neurosurgeon who we both thought I had it but after many scans/visit it was determined was not all chiari related...

Have you ever heard of Ehlers-Danlos Syndrome. I have EDS and at one time had some very serious chiari related issues...I have had a couple of spine surgeries, but never had the Chiari surgery performed fixing some other issues seemed to help, there are a few groups on FB I could direct you to as well if you were interested.
"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
Only Me (OP)
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04/06/2013 06:32 PM

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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
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)
...there is no you

User ID: 34792354
United States
04/06/2013 06:34 PM

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Re: Chiari Malformation (update pg 2)
 Quoting: MissionInvisible


I am pretty familiar with it actually. I went through a long phase with my neurosurgeon who we both thought I had it but after many scans/visit it was determined was not all chiari related...

Have you ever heard of Ehlers-Danlos Syndrome. I have EDS and at one time had some very serious chiari related issues...I have had a couple of spine surgeries, but never had the Chiari surgery performed fixing some other issues seemed to help, there are a few groups on FB I could direct you to as well if you were interested.


I have heard of EDS but I don't know much about it. I guess my neurologist can tell me more. Blegh - gotta suck to.have that
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
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04/06/2013 06:35 PM
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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


That sounds extreme. There are neurosurgeons who have more experience with it than that. My friend had to go to Boston, and the biggest concern they had was the possibility of a "revision" surgery, nothing like you are describing. She had Chiari I Malformation.
MissionInvisible

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04/06/2013 06:37 PM
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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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.
"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
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04/06/2013 06:39 PM
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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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.
Only Me (OP)
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04/06/2013 06:39 PM

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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


That sounds extreme. There are neurosurgeons who have more experience with it than that. My friend had to go to Boston, and the biggest concern they had was the possibility of a "revision" surgery, nothing like you are describing. She had Chiari I Malformation.
 Quoting: Anonymous Coward 18150467


Yeah? Maybe I can find a good neurosurgeon who can help me avoid the major issues. I think the thing about chiari is that it's different for everyone who has it. Some have no problem and others have major problems with it.

I only just found out about it - hopefully it will turn out ok like your friend's daughter ..
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.

MissionInvisible

User ID: 27358843
United States
04/06/2013 06:41 PM
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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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!
"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
Only Me (OP)
...there is no you

User ID: 34792354
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04/06/2013 06:42 PM

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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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 cord isn't tethered and I don't think I have syringomyelia. My csf spaces are crowded though.

It's funny how the symptoms are so vague and could mean just about anything. I've run the laboratory test gamut recently, and they even did an ekg. It's been crazy
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.

abeliever

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04/06/2013 06:42 PM

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Re: Chiari Malformation (update pg 2)
One out of three people have it.

Tell tale sign that you are one of the three people who have a chiari malformation of the brain is to look in the mirror to see if your uvula is crooked.

One out of 10 of those have to have surgery to allow spinal fluid to flow around the brain.

It is not a big deal. Don't worry even if you need the surgery. It's ok.
Only Me (OP)
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04/06/2013 06:43 PM

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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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


Does the brain MRI show tethered cord or is that a separate scan?
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: 18150467
United States
04/06/2013 06:44 PM
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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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.
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04/06/2013 06:44 PM
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Re: Chiari Malformation (update pg 2)
All my prayers to you Only Me. I had a brain anerysm and I know first hand how frightening brain surgery can be. I was
extremely lucky they could operate via the blood vessel in my leg. The surgery went well and now its been almost seven years. Try not to worry, I know its hard though.
Only Me (OP)
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04/06/2013 06:44 PM

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Re: Chiari Malformation (update pg 2)
One out of three people have it.

Tell tale sign that you are one of the three people who have a chiari malformation of the brain is to look in the mirror to see if your uvula is crooked.

One out of 10 of those have to have surgery to allow spinal fluid to flow around the brain.

It is not a big deal. Don't worry even if you need the surgery. It's ok.
 Quoting: abeliever


One out of three? Our neuropathologist told me it was rare in adults.
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)
...there is no you

User ID: 34792354
United States
04/06/2013 06:47 PM

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Re: Chiari Malformation (update pg 2)
All my prayers to you Only Me. I had a brain anerysm and I know first hand how frightening brain surgery can be. I was
extremely lucky they could operate via the blood vessel in my leg. The surgery went well and now its been almost seven years. Try not to worry, I know its hard though.
 Quoting: Anonymous Coward 2525436


Thanks. Glad you're doing better.

As for the person saying it's no big deal, like I said before, for most it isn't a big deal and for others it can be physically devastating.

I just need to be evaluated further.

I think it's the fainting and constant brain fog that makes me so scared.


Still, hearing people say it's no big deal kinda makes me feel less weary of it :-)
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.

MissionInvisible

User ID: 27358843
United States
04/06/2013 06:48 PM
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Re: Chiari Malformation (update pg 2)
I knew there would be glpers aware of this rarity!

I have type 1 and I think it's less severe than the kind that is present from birth.

As for the surgery, I was told I would spend two days in icu and another few days in the hospital, then up to three months off work. And that's if it works. If not, I'll be permanently disabled.

This is scary.
 Quoting: Only Me


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 cord isn't tethered and I don't think I have syringomyelia. My csf spaces are crowded though.

It's funny how the symptoms are so vague and could mean just about anything. I've run the laboratory test gamut recently, and they even did an ekg. It's been crazy
 Quoting: Only Me


Yea when it gets really severe it can affect so many different parts of the body...symptoms are definitely across the board, the EKG could have had to do with the way your brain and heart were communicating? maybe? Not sure, I had to have a few of them to track my heart patterns. When the swelling on the spinal cord gets really bad it can cause issues in areas of the body you did not even have issues with!

I was having all kinds of balance, studdering, vertigo, you name it (much of it was EDS related, but their symptoms definitely overlap).


I hope you can find some answers and nothing too invasive has to happen.
"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
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04/06/2013 06:49 PM
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Re: Chiari Malformation (update pg 2)
One out of three people have it.

Tell tale sign that you are one of the three people who have a chiari malformation of the brain is to look in the mirror to see if your uvula is crooked.

One out of 10 of those have to have surgery to allow spinal fluid to flow around the brain.

It is not a big deal. Don't worry even if you need the surgery. It's ok.
 Quoting: abeliever


One out of three? Our neuropathologist told me it was rare in adults.
 Quoting: Only Me


Op - this may be helpful:

Chiari support group - [link to www.chiarisupport.org]
MissionInvisible

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04/06/2013 06:50 PM
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Re: Chiari Malformation (update pg 2)
This might sound funny, but EPsom salt baths can work wonders if you are having pain from it. The magnesium really helps your body heal and reduces some inflammation from it. I also add in baking soda, and some lavender to help with relaxation.
"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
Only Me (OP)
...there is no you

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04/06/2013 06:51 PM

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Re: Chiari Malformation (update pg 2)
Thanks guys -I love all of you <3

Last Edited by Only Me on 04/06/2013 06:51 PM
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
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United States
04/06/2013 06:51 PM
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Re: Chiari Malformation (update pg 2)
Do you have torticollis at all?
Only Me (OP)
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04/06/2013 06:52 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!
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.


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