Re: Acquired congenital, etc.

[Guest guest]

Man, this is one of the most debated , forms of phrasing that I have seen.

There are the docs , and people who refer to " it " ,

(now, is " it " the presence of cerebellar tonsils , below the foramum

magnum?, or the presence of Chairi symptoms?, or just plain crowding in the

skull?)

I see it referred to as ACM " syndrome " (one of the closest easily used

terms I have seen since it covers most , all states of this)

I have read , and been told that there is no Chairi, unless there is a

herniation, below a certain level.

I am pretty sure I remember someone in the group , that had no herniation,

until and accident, then they did, and after , either time and surgery, or

one or the other, the herniation went away again. I don't think their docs

believe the Chairi is gone, tho.

As far as " acquired Chairi " , it sure seems like the herniations, getting

larger, can be acquired, and the symptoms , can be acqired.

And does something that happens before or during birth, to the fetus,

qualify as " acquired " ?

There are so many ways to say all this, and still come out confused.

At least from this view.

I think they still need to decide on a name , or give up on a name, and just

make a general classification , such as ACM syndrome, that could cover it

all.

Even crowding, with no herniation, hydrocephalus, from too long in the birth

canal,etc.(and those cases are out there too, maybe not on this list, but

they are) .

I even have seen one Dr. refer to as, having all her breathing

problems, from early childhood, and perhaps birth, because she saw asthma,

in her records from years ago.

Well she may have had very , very rare asthma attacks, but she acquired ,

the damage , done , that makes her stop breathing, and the valve in her

throat clamp shut, from the existing malformation that was most likely

there from birth , The bone malformation, in this case.

Now , the small fourth ventrical. was that acquired from the , skull

malformation , during growth, or from birth?

What about those who have required a shunt, but never have been diagnosed

with

Chairi, or hydrocephalos ?

There are a lot of opinions, and terminologys out there.

Some of them hilarious , almost, in how ridiculous they are.

One of the last conversations I had with present, involved ..

" I understand there is a Chairi malformation, and was vascular problems, but

please tell me why this surgery was performed ? "

I guess what I mean is... " This is your brain... This is your brain with your

clipboard in it " .

Curiouser and curiouser,

Terry

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