From: mriggs33@... <mriggs33@...>
Subject: Re: [hydrocephalus] Re: Porencephaly and hydrocephalus
To: hydrocephalus@yahoogroups.com
Date: Wednesday, February 11, 2009, 12:35 PM

Happy birthday peter! You truly are a miracle walking - and from my little miracle (kaila) to you - may you have many more! Michelle

--- Original Message ---
From:"PETER MCNALLY" <pjdkmc17@yahoo. com>
Sent:Wed 2/11/09 11:23 am
To:hydrocephalus@ yahoogroups. com
Subj:Re: [hydrocephalus] Re: Porencephaly and hydrocephalus

Thank you for all your replies. I don`t know what kind of procedure they would have performed on me when I was an infant because they did not know what to do. I survived a very rocky childhood and have a very large head. I have lived a pretty normal life with little side effects. They are a lazy left eye, periodic powerful headaches which last for about a minute or so. Today is my birthday, I turned 65.              Peter

--- On Wed, 2/11/09, srochman2000 <srochman2000@ yahoo.com> wrote:

From: srochman2000 <srochman2000@ yahoo.com>
Subject: [hydrocephalus] Re: Porencephaly and hydrocephalus
To: hydrocephalus@ yahoogroups. com
Date: Wednesday, February 11, 2009, 10:18 AM

Jill.

Long story short with me. Im sally. 30 years old. First shunted

under emergency status when I was 23.A doctor did a cat scan and saw

that my whole head with the exception of about an inch was filled

with spinal fluid. so I then went in and had emergency shunt surgery

due to hydrocephalus. OK 6 monhs after the surgery my walk started

to get bad again. I went to numerous doctors and they all wouldnt

touch me. MY own doctor told me not to mess with something that

wasnt broken

ok...so years went by and finally this past year I was encouraged by

my husband and my family to see another NS bec my old one retired. I

ended up at Edison, NJ's Neo clinic. One of the best in NJ. So My

doctor (my savior in my eyes) did tests etc and said he would

perform a shunt revision. After the shunt ogram (thats when they take

a needle and draw out fluid from the shunt to see if the shunt is

working) he said it was working but VERY VERY slowly and up to me if

i wanted to go forward with the surgery. I had the surgery on Dec.

30, 2008. Im happy to say that I am on my way to recovery. MY walk

is almost 100 percent better and with the help of PT Im doing great,

I still have pain or soreness back at the shunt and small headaches

but my NS said he is not concerned bec that is just me healing....as

long as my "headaches" arent all over my head and are on the side of

where the shunt was put in. He told me that it could take me months

to stop feeling the soreness over there. Im so happy that I found

this doctor. HE was the only NS in my area that would actually take

me seriously and do the surgery. Good luck to you and I am praying

for you and everyone in this group....

Sally

--- In hydrocephalus@ yahoogroups. com, Sweetrse7@.. . wrote:

>

> Hi-

>

> My name is Jill and I was born with Dandy Walker Syndrome

Hydrocephalus, and

> luckily mine was caught when I was barely a week old. I do have a

slightly

> enlarged head, but other than that i don't seem to have any other

physical

> abnormalities aside from misaligned big toes. I have had over a

dozen

> surgeries though. The first shunt that was placed in infancy was

a VP. Following

> that I have h