christinablue

[Zenji]

I didn't even realize till like a min. ago a friend of mine has an account on here too. her name is christinablue. I am talking to her on the phone when I told her i was on this site she said she was too. She wanted me to give you guys an update. She is completely blind now and has lost the ability to use her legs. Due to some kind of complication I don't understand. For now I don't really have much good to report except that she can talk on the phone which is an improvement.

[Zenji]

Yeah I think hydrocephalus is what it was called is that the one they normally find babies?

She is currently seeing a pediatric neurosurgeon is say he is not a "Chiari Specialtist" but that he has worked with several patients with Chiari as well as multiple other rare brain disorders. So far he seems to know what he is doing because she is getting better i am just glad she got away from that first doctor that i think made things this bad.

[selmaS]

Oh my....what a mess.

Did she have a chiari dr taking care of he

So Christina had hydrocephalus?

Wow.....Please pass along my concern and well wishes and keep us posted on her progress.

"selma"

[Zenji]

I don't completely understand it but basically what her doctor told me was that her had a been full of fluid for a long time longer then he had seen anyone go for before seeing a doctor and because of the fluid her brain is "boggy" (his word not mine). He had placed a shunt in her head to drain the fluid (that's where we met) but her ventricles are very small so he also had to place a shunt in her spine to help drain the extra fluid but everytime they tried to put the shunt in there were complications because the shunt in her spine was draining too much fluid and because her brain was so "boggy" the shunt was actually pulling her brain down and pulling the chiari malformation down even further which was causing it to mess with the brain stem. They put in a suction like thing that comes out of her head and attaches to a machine that is suppose to be "holding her brain up" so there is no more damage. or something like that.

[selmaS]

Hi ...Please do pass along Hello and well wishes form me as well.

I remember that she had a surgery, but it was not chiari related....May I ask what is causing her issues?

God Bless
"selma"

[youngwife]

Please tell your friend that she will be in my prayers!  I am so very sorry that her condition has worsen. :(

Blessings,

Rebecca