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Hi,

I do believe this is the Segment that everybody has

been talking about here. So now it looks like we

have nothing to worry about and it is going to Air.

Take Care,

Brande

mymocha@...

>

> I looked at 20/20's lineup for 2/25/00, and it said that they were

> going to talk about chronic fatigue syndrome and fibromyalgia.

>

> Does anyone know if ACM is in this segment as well.

>

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  • 2 weeks later...
Guest guest

I watched the 20/20 show tonite and the chronic fatigue show was also the

chiari show. It showed how many people have probably been missdiagnosed with

Fibromyalgia and chronic fatigue syndromes and how tow of the people found

relief by having the chiari brain surgery.

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Hey all:

I think it was a great piece on decompression surgery and it's benefits

rather than CFS vs. Fibromyalgia vs Chiari vs. Syringomyelia. I am glad they

did not do the same thing NBC did in giving equal time to doctors who feel

the surgery is a false hope. For those who have been well informed, you all

know what the results may or may not be. It's different for everyone and as

long as your nsg is one to be trusted and is honest in saying this is NOT a

cure, then I feel that the option to have or not have surgery is an personal

one each must make with their family.

I see , my partner, and how she is improving from surgery 4 weeks ago.

The pain in her back has decreased, the headaches are subsiding and the is

feeling better in general. For us, it was the only option. Thanks to 20/20,

there is now more of a focus on how real this is for many people.

Hope everyone is doing well.

Tisha

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<< But I was wondering if anyone noticed, they called it Chiari syndrome and

not Chiari malformation. Is there a difference. Just wondering.

>>

the malformation can cause a complex ( more than one , often many ) of

symptoms , these added together are known as chiari syndrome . The symtpoms

are not the same in all folks with chiari , therefore they syndrome can also

vary in what symtpoms are expressed .

hope that makes sense ....take a look at the chiari symptoms study on the web

pages ...not all folks have every symptom .....but most of us do have a combo

of these symtpoms if the chiari is symptomatic .....i do think its worth

remembering , some folks have severe malformations , and little difficulties

.....others pretty mild malformations but severe symtpoms ....this part is

still a puzzle to the experts ...they are working on understanding it all

better now .....my sugestion to all reading this ......consider suporting the

research efforts underway through the american syringomyelia alliance project

and duke university if your able too .

sarah in paradise

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That is the Chiari Show...........you watched the right Show. :)

Brande

mymocha@...

> i am watching 20/20 and they are showing chronic fatique syndrome. Are

they

> going to show the chairi show? i told all my friends to watch it and all

my

> family. i am going to feel terrible if they dont' show it.

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Nancee:

They did not tell you all about the show. I am the one that they kept

showing-the fuzzy pictures...and Dr. Rosner examined me-this was right before

my surgery........my surgery was taped and also I was interviewed prior to-I

think they will do a followup as if you do not blink...you will see me in

bed...walking with the cane, etc. So write ABC 20/20 to let them know they

did a good job.

AJ

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Hello Friends,

I have been here awhile too.....probably 2-21/2 years.....

There is no way, in 20 minutes that they could possibly tell everything that is needed to know on any show.

All I take this show along with the others for is to get the word out there....which it has not been, in a positive way, so that most newbees would not be scared to death to pursue the avenues open to them for a diagnosis.

It is totally up to the individual and their doctor to stress the value and 'scariness' of the possible surgeries based upon each and every case.

I am, for one, very excited that since I first came here, there is such a dramatic move forward in the acceptance of our 'imaginary' ilness............that comes from knowledge.

These 20 minute shows are only the tip of the iceburg....hopefully the newbees that have joined us each time after a show....can learn more by speaking to us....and reading, reading, reading. Knowledge is power my fellow friends.

Hugs, Nancee

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Hi,

Yes, I noticed. I thought it was misleading, but I do not believe there is any difference in if they call it a Syndrome or Malformation.

Brande

mymocha@...

But I was wondering if anyone noticed, they called it Chiari syndrome and not Chiari malformation. Is there a difference. Just wondering.

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