Re: 20 20, another opinion!

[Guest guest]

Tippy Toes said..

<My point is as great as both shows were they really didn't show what

your lives are like everyday with the inability to do the things you did

before < work. home, caring for your families, activities, sports, etc >

and the pain you suffer everyday. They made it sound like recovery was

full and miraclous and that concerns me because a lot of you still have

many problems and you've had to have to more surgery later on. You know

there are always two sides, no three sides to every story <doctors -

patients - and the truth>.

My 2 cents....

I think that media exposure is good, although I also think both shows did

not show 'full blown chiari' and how difficult it can be.

They made the surgery sound like just an option, which it is for the

borderline chiari people. The show also said chiari was not

life-threatening.

There are some on the list that would beg to differ with this, as we've

been close to the edge there. And if you do get to that point, then the

surgery becomes a more of a necessity and less of an option.

It was a rather simple story, didn't even show the cerebellar/brainstem

part of it, which is of course the part that causes a lot of damage.

They did make it sound purely 'mechanical', but hey guys remember the

spinal tissue that could be damaged?

Neither show had a 'worst case' example. Then it would make a lot more

sense why people are choosing to have the surgery, and why they would

want to do it sooner. It would be nice if they had such an example to

show this, just for comparison. It would also be nice if Dr. Milhorat

were interviewed, someone who has seen many, many patients at all levels!

(My dreams for a more in-depth analysis some day!) But the media has to

keep it light and sensationalizing - brain surgery for chronic fatigue!

Great headlines!

However, its a start, and I am glad for the media exposure..... I think

that both Dateline and 20/20 spotlighting our little ole disorder is

great! I was so touched to have someone else explain it - I no longer

felt like a green alien from outer space!

Barbara in Florida

" I am no longer afraid of storms, for I am learning how to sail my own

ship. "

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