Deb - Arnold Chiari and CF

[Guest guest]

In a message dated 8/26/2003 6:53:08 AM Central Daylight Time,

gale.harris@... writes:

> Gale

>

I have never even heard of Arnold Chiari. was a year old when we

found out about her hydrocephalus. They told me that the tube that drains down

to

her spine did not form to normal size so she drains some but not enough to

keep up with what is going into her head so it took a year before there was

enough fluid there for her to be having symptoms. She has never had any reflex

problems at all. She does have a shunt in fact she has two on one side because

there was fluid on the front and back of her left side. She also has

porencephaly which means her front ventricle did not develop which really helped

her from

not having any damage to her brain because there was an area for the fluid to

go to. I hate telling people that she has this because one time I said this

to someone and the next think I was hearing was she was born with only half a

brain which is not true at all! When you are young you brain never had that

section there so it learns to develop without that piece so she does very well

you don't even know she has any problems even a lot of the doctors and residents

are surprise when the see her shunt. She walks fine, has know speech

problems, the only think she has problems with is her remember things and you

have to

repeat things until it sticks. Heck I am like that to when I hate something it

doesn't stick and I don't have any medical excuse for my memory problems!

Well, I won't bore everyone with this because it really has nothing to do with

CF

but I would love to read that article Gale if you find it. Thanks Deb A

[Guest guest]

Deb,

Abby also has mild hydrocephalus. Abby has Arnold Chiari. With

Arnold Chiari, the brain stem extends too far down into the spinal

cord. This prevents the fluids around the brain from draining the

way that they should. It also puts pressure on a nerve (can't think

of what the nerve is called right now). This nerve controls the gag

reflex. Does have Arnold Chiari? I think that it would

only be detected with a CAT scan of the head. Does her hydrocephalus

cause her to have swallowing difficulty? Has she had swallow tests?

Does have a shunt?

Abby's swallowing difficulty caused repeat lung infections and

eventually led to the removal of the upper lobe of her right lung

(prior to the dx of the swallowing problem). I just wanted to make

sure that isn't having the same problem, undetected.

About a year ago, Torsen sent me an article that discussed Arnold

Chiari and CF. I will dig through the archives and see if I can find

it for you.

Gale

> Well, also has hydrocephalus so she has problems with

memory and she

> needs thing repeated to her because it takes a while for things

that don't

> interest her to soak in. Her nero. surgeon said she would need a

lot of one on

> one to help her learn so the school as been great with that

[Guest guest]

My brother was born with Spina Bifida, Hydrocephalus and Arnold

Chiari malformation. He is 26 now and is doing great. He had a shunt

put in when he was younger and has had no problems with it. He does

have seizures though. He also had some developmental delays and was

in special education classes. He struggles the most with math.