Re: What is Arnold-Chiari Syndrome? versus Chiari?

[Guest guest]

I find this kind of interesting. My sister has become very ill from carbon

monoxide poisioning and her brain has atrophied. She also has pressure on her

optic nerve. My mother told her doctor that I have Chiari Malformation and

wanted to know if this could also be a possibility. 2 days later my sisters

doctor asked what Chiari Syndrome had to do with the brain. Both my mother and

I were confused. We found out that there is a condition called Budd-Chiari

Syndrome! This is a rare liver disorder that also affects the stomach and

spleen. We had to educate the doctor that I have Chiari Malformation not to be

confused with Chiari Syndrome. I think I would request that inaccurate

information to be changed. Sorry so long but thought it interesting for all too

know that these 2 conditions may sound very much alike but are very different.

Shauncey

Decompressed 01/07

Sent from my Verizon Wireless Phone

[Guest guest]

Same thing.  " Chiari " is just short Arnold-Chiari Malformation or Syndrome.  A

syndrome is something that docs can't really find answers to why things happen

but they think they're attached to this certain thing (like ACMs). 

Ehlers-Danlos is another example.  They don't exactly know why this causes what

it does, they just know there are certain symptoms associated with it.

Subject: What is Arnold-Chiari Syndrome? versus

Chiari?

To:

Date: Thursday, January 12, 2012, 2:55 PM

 

Hi Everyone,

I ordered my medical records from my PCP because I'm considering changing from

this clinic. They have become a large clinic with less time for patients which

I'm not sure that is not going to be happening everywhere but it certainly

doesn't hurt to have your medical record either.

Here's a question for anyone who might know. . I have been decompressed,

detethered and being treated for Craniocervial Instability and of course,

depression and chronic pain and yes, sleep apnea. I notice in my chart they

refer to my diagnosis as Arnold-Chiari Syndrome.

And just a side note, I've been feeling yucky lately so maybe it's just a

wording issue for me and I am being sensitive? But there is actually a coding

for insurance for the Syndrome as well as Chiari and they are different.

Does anyone know the difference?

Thanks,

Wyoming

[Guest guest]

The language means the same thing.

________________________________

To:

Sent: Thursday, January 12, 2012 1:55 PM

Subject: What is Arnold-Chiari Syndrome? versus

Chiari?

 

Hi Everyone,

I ordered my medical records from my PCP because I'm considering changing from

this clinic. They have become a large clinic with less time for patients which

I'm not sure that is not going to be happening everywhere but it certainly

doesn't hurt to have your medical record either.

Here's a question for anyone who might know. . I have been decompressed,

detethered and being treated for Craniocervial Instability and of course,

depression and chronic pain and yes, sleep apnea. I notice in my chart they

refer to my diagnosis as Arnold-Chiari Syndrome.

And just a side note, I've been feeling yucky lately so maybe it's just a

wording issue for me and I am being sensitive? But there is actually a coding

for insurance for the Syndrome as well as Chiari and they are different.

Does anyone know the difference?

Thanks,

Wyoming

[Guest guest]

I've heard Chiari referred to as both ACM and ACMS - Arnold Chiari Malformation

Syndrome. I hadn't heard Arnold Chiari Syndrome before though. But I'm sure they

meant the same thing. Blessings, Cortney

[Guest guest]

Re: Chiari Syndrome

Yes, there is a Budd-Chiari Syndrome, which is a complex liver disease, and

there is another - Chiari-Frommel Syndrome - that involves hormone dysregulation

in post-partum women. However, the word Syndrome isn't what distinguishes these

two from the kind of Chiari that we have.

Our kind is also a syndrome, because it is complex and the symptoms affect more

than one body part. When CM was first named a century ago, it was called

Arnold-Chiari Malformation because the discoverers noticed only the deformed

tissue and its directly observed effects. They didn't realize the extent of its

influence on the body until this past decade. So now, the more aware doctors

refer to what we have as Chiari Syndrome.

Hope this clears it up.

Oh, and here's something to ponder: It is possible, though unlikely, for an

unlucky person to have all three of these independent medical challenges, and to

have to organize all her different types of Chiari doctors. Wouldn't that be a

mess! Doesn't seem so bad, now, to suffer from just one kind of Chiari....

Wishing wellness for everyone,

Sandy