what are my odds -for wade /ncc

May 15, 2008

Hi Wade

Just to let you know your concern is understandable, but i would love

to say don't let it get in the way of your decision to go. We made

the trip to TCI from Australia last year. My daughter, at the time,

didn't even have headaches. In her case, we did get answers, and this

is often the start of another new journey. Unfortunately there is no

magic medicine you come home with!

We believed we were obtaining the opinion and expertise of an

unbelievably talented and experienced team of surgeons/specialists.

Just sheer numbers tells me they have to know more because they have

seen more. (I have learned quickly that even here on the other side

of the ocean, the neurosurgeons ears seem to prick up when I quietly

mention Dr Milhorat's name!)

Our pediatrician was very concerned we would go all the way to NY at

considerable cost and it would have been a waste.

But it was clear as a bell for me - if TCI said her problems weren't

Chiari-related, i think you may have found me on 5th Avenue

celebrating with the best champagne. Because i would finally know for

sure that i had found a definitive answer, and one I would believe

and not question. I never had that confidence anywhere else i went

for help.

We do all seek a name for our pain, and need a plan to go forward.

You will get that at TCI, even in the rare instance that your plan to

go forward is that Chiari and its related disorders are not your

problem. I know it would be hard to hear that, but that in itself is

an answer, and one from the very specialists who would know. It would

not help us at all if they only took on patients they were certain

they could help - that would see some of us falling through the net i

am sure.

I do hope you find some answers. I have no doubt you will at TCI.

Their professionalism, and talent is unquestionable, and for

neurosurgeons especially, they sure show a lot of empathy and care

too! we will be heading back there in a month, a decision that was

easy to make.

Best wishes to you,

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