Jill,

Yes. I just went on friday for a follow up and told him that I was
having some headaches and my shunt area was sore.....I just had
surgery on Dec 30 so he said that was the healing process for me. He
said all people are different but that I could have this soreness for
a few months because the head is a sensitive area. Now in your case,
if you were okay from 2003 up until now, well Id be a bit
concerened. Why hasnt your NS done anything? he should at least
give you a cat scan to see if the shunt is okay in the head. Take it
from me, if a doctor wont help you go to someone else. I waited way
too long in case. I lived 8 years with a limp that I was embarrased
about... Now I dont have any kids like in your case though.....So
what does your doctor say is the reason for your pain now? Are you
having bad headaches as well?

Sally
I will pray for you.

--- In hydrocephalus@yahoogroups.com, Sweetrse7@... wrote:
>
> Sally-
>
> Thank you for the information. I am a little confused though,
your ns told
> you that pain in the shunt area was the normal healing process ?
Mine was
> replaced in 2003, why do you think I would be having the pain now ?
>
> Thank you-
>
> Jill
>
>
> In a message dated 2/11/2009 7:19:00 A.M. Pacific Standard Time,
> srochman2000@... writes:
>
>
>
>
> 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@hydrocephaluhyd_
(mailto:hydrocephalus@yahoogroups.com)
> , Sweetrse7@, Sw
> >
> > 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 monica_
> >
> >
> >
> >
> > personally i have hydrocephalus. personally i have
hydrocephalus.<WB
> 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.. hereditary..<WBR>my FYI-my f
> > --- On Tue, 1/13/09, pjdkmc17 <pjdkmc17@...> wrote:
> >
> >
> > From: pjdkmc17 <pjdkmc17@...>
> > Subject: [hydrocephalus] Porencephaly and hydrocephalus
> > To: hydrocephalus@ To: hy
> > 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
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ************ ************<WBR>**A Good Credit Score is 700 o
> just 2 easy
> > steps!
> >
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