Hmmm....NO I have never had the drainage from the ear thing...and
whenever I bend over or get up quickly I feel the pressure and i have
to take a sec to get my witts about me, but my NS said thats
normal....
Is it possible that they can speed up getting you that referral?
I would want to clear things up you know? I hate having the "unknown"
Would you maybe want to see another NS and start off new? I hope
they can find whats going on with you......YOu sound like you are in
pain., The headaches that Im having are on the right side of my head
where the shunt is....but im having faith in god and my NS...He says
that normal...Im taking him at his word....
sally




--- In hydrocephalus@yahoogroups.com, Sweetrse7@... wrote:
>
> Sally-
>
> I have had monitoring of my shunt, but have not had a scan in some
time.
> The ns that I was seeing in SF is no longer my dr. because he was
a specialist,
> and I now have seen one in my city, and did have a CT scan that he
informed
> me looked the same as it did in 2003. I do have a problem with my
memory as
> of late, and am not sure as to when I had that last scan done. I
am thinking
> it was a few years ago though. I am currently awaiting approval
for a
> referral for a scan. I have had headaches that seem to radiate
from the center of
> my head out to my eyeballs. It sort of feels as if I have suction
cups
> pulling on them. The pain in the shunt area does worry me. As
well as the fact
> that I am having mood swings which aren't the norm for me. I have
also
> noticed that when I bend down or lower my head I get intense
pressure pain. I am
> not sure about the reason for that or if it is even related to my
problems.
> You do think that i am not being paranoid though ? Have you ever
had a
> problem with drainage from your ears that is clear ? I also have
very horrible
> ear problems. I have constant pain, which cannot be explained
because I have
> seen a specialist for it and he cannot figure out why I am having
the pain
> because I my ears appear to be perfect ! He has even done testing
to confirm.
>
> Jill
>
>
> In a message dated 2/11/2009 10:43:48 A.M. Pacific Standard Time,
> srochman2000@... writes:
>
>
>
>
> 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@hydrocephaluhyd_
(mailto:hydrocephalus@yahoogroups.com)
> , Sweetrse7@, Sw
> >
> > 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@ srochm
> >
> >
> >
> >
> > 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@ --- In _hydr
> (mailto:_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!
> > >
>
(__http://pr.atwola.http://pr.http://prhttp://pr.atwolhttp://pr.atwola
_
>
(http://pr.atwola.http//pr.atwhttp://pr.atwolahttp://pr.atwolahttp_)

> >
>
(_http://pr.atwola.http://pr.atwhttp://pr.atwolahttp://pr.atwolahttp_
>
(http://pr.atwola.com/promoclk/100000075x1218550342x1201216770/aol?) )

> >
redir=__http://www.freecredhttp://www.frehttp://www.freehttp://www._
> (http://www.freecredhttp//wwhttp://www.freehttp://www.free_)
> > (_http://www.freecredhttp://wwhttp://www.freehttp://www.fre_
> (http://www.freecreditreport.com/pm/default.aspx?sc=668072) )
> > 26hmpgID=62% 26hmpgI
> > > bemailfooterNO62)
> > >
> >
> >
> >
> >
> >
> > ************ ************<WBR>**Nothing says I love you like
flower
> near you
> > now. (_http://yellowpages.http://yellowpa_
> (http://yellowpages.aol.com/search?)
> query=florist&<WBR>ncid=emlcnt<WBR>ncid=
> >
>
>
>
>
>
> **************Nothing says I love you like flowers! Find a florist
near you
> now. (http://yellowpages.aol.com/search?
query=florist&ncid=emlcntusyelp00000001)
>