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 had revisions, and tube replacements due to blockage.
Until
> recently my shunt appeared to be working. In 2002 I had my second
child and then
> shortly after had complications which were thought to have been
due to a
> Pituitary tumor. I later had surgery to remove that, and lost
peripheral vision
> in my left eye. After having this surgery my pediatric NS
reviewed my scans
> and was appalled upon realizing that was not the problem. My
shunt had
> malfunctioned, and he called a specialist in SF to review my file,
an perform
> surgery to fix it. During this whole time I was having terrible
head pain, and
> was informed by this surgeon that I would be flown to SF to have
the emergency
> surgery if my symptoms worsened before my scheduled date. Luckily
that
> didn't have to happen, and I was transported to SF in July of 2003
for surgery.
> My VP shunt, which was found to have disinegrated was replaced
with a
> Programmable one. Since having that surgery though I have been
dealing with pain
> periodically. It has gotten worse in the years since my surgery
though, and I
> fear that it may have malfunctioned as I have read that the
expectancy of a
> shunt is only 3-4 years and I am going on 6 with mine. Aside from
that I was
> originally wanting to let you know that I have had two children
with normal
> pregnancy, and deliveries who do not have any signs of Hydro.
>
> Best Wishes-
>
> Jill
>
> 33 yrs old
>
> Ps.... I do have poor eyesight which I am told was due to hydro
>
>
> In a message dated 2/9/2009 3:05:36 P.M. Pacific Standard Time,
> monica_thornton2003@... writes:
>
>
>
>
> personally i have hydrocephalus.per my parents found out when i
was about 6
> months old... they were going to put a shunt in,,, but the next
day i didnt
> need it... i am now going on 33yrs old... i have never had any
issues but
> vertigo, headaches, and of course the big head... i am greatful to
be how i am...
> and my fourth child was also born with mild hydro... though they
say its not
> hereditary..my FYI-my father also has it.
> --- On Tue, 1/13/09, pjdkmc17 <pjdkmc17@...> wrote:
>
>
> From: pjdkmc17 <pjdkmc17@...>
> Subject: [hydrocephalus] Porencephaly and hydrocephalus
> To: hydrocephalus@To: To:
> Date: Tuesday, January 13, 2009, 1:24 PM
>
>
>
> How many of you out there have both conditions or have kin with
both
> conditions? All I get as far as feedback on my condition is a
shake of
> the head and "I don`t know why you survived or are able to function
> normally." Peter
>
>
>
>
>
>
>
>
>
>
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