Heidi,

I was just born when my hydro was first suspected - as a matter of
fact, my dad is a (now retired) general surgeon, so was one of the few
fathers to be in the delivery room back in 1960, when I was born.  He
was a little over halfway through his fellowship in vascular and
thoracic surgery then practiced GS, because there wasn't anyplace in
Wyoming, where he wanted to live, that was developing a
thoracic/vascular department)  so the N/S rotation was still fresh in
his mind.  He suspected hydrocephalus right away, and got in touch
with a friend who was a neurosurgeon and asked him to come have a
look.  Dr. G. came over within a day or two, said he also suspected
hydrocephalus, and said to watch for motor issues.  At that time, my
head was at the 95th %ile, so they decided to watch it for a while, as
Dad's side of the fgamily has large heads to begin with.  By 2.5
months my head was at the 110th percentile, or thereabouts, but I
wasn't showing profound symptoms of the hydro.  By 3.5 months, it was
at the 125th, so they decided to do a pneumoencephalogram - remember
this was well before CT and MRI, and ultrasound back then was "iffy"
at best.  The pneumo showed the hydro, so I was shunted at 4 months.
CP was officially diagnosed when I was about two, and wasn't walking,
or even cruising well yet.  I eventually walked at around 3 and a
half.  I talked right on schedule or early, and learned to tell people
when I needed to go potty, so I was potty trained before I could walk.

The hydro was caused by a cerebello-pontine angle (CPA) cyst that
obstructed the Aqueduct of Sylvius.  I had an intra-operative stroke
(middle cerebral artery) during a shunt revision when I was 16, and
ended up with left hemiplegia on top of my spastic diplegic CP.  The
silver lining in this was that I got sent to the University of
Cinncinatti Children's Hospital after the stroke and a subsequent
shunt infection, and during the workup for the CPA cyst, the head of
Peds neurosurgery said "I think we can fenestrate this, and you can be
shunt-free."  I haven't had a shunt since Friday, January 13th, 1978.
So I look at Friday the 13th as my Lucky Day!  (Wonder what'll happen
tommorrow?)
;-{)}

Self diagnosis is a significant risk for those of us who were brought
up in the medical profession, or work(ed) in it, so I applaud your
caution, but I will mention a hyperactive gag reflex as being one of
the signs that I was in shunt failure before my cyst was fenestrated,
as it produced a psuedo Arnold-Chiari malformation.

 I also subscribe to a listserve for people with hydrocephalus, so
forgive the "gory details," people.  It's populated by a bunch of
people who approach the condition (necessarily) from much more of a
medical model.

On 7/12/07, heidi tibollo <[log in to unmask]> wrote:
> Hi
> Sorry Kendall- somewhat distracted. I've just signed up. I'm a mom of two boys- 41/2 and 13 months. Our physician suspects a neurological problem with our 13 month old due to delays and some gagging issues. Of course, now I look back on my pregnancy and see every possible reason or cause (the asthma, the GD, etc.) and have lots of guilt. Will go the the CP clinic in October, in the mean time we are getting county assessments and most likely PT. Thank you for the link- I was very interested in a picture also but will just wait to see the MD before I start self-diagnosing here.
> Thanks!
> Heidi
> PS Did not know that hydrocephalus could cause CP (makes sense). Were you a baby when this happened? Do you now have a shunt? Was a neuro nurse.... (mostly TBI and strokes)
>
> ----- Original Message ----
> From: C-PALSY automatic digest system <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thursday, July 12, 2007 12:01:06 AM
> Subject: C-PALSY Digest - 10 Jul 2007 to 11 Jul 2007 (#2007-129)
>
>
> There are 2 messages totalling 73 lines in this issue.
>
> Topics of the day:
>
>  1. Teddy bear pose (2)
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go here:
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> ----------------------------------------------------------------------
>
> Date:    Wed, 11 Jul 2007 01:16:20 -0400
> From:    Heidi Tibollo <[log in to unmask]>
> Subject: Teddy bear pose
>
> Hi-
> Does anyone have a picture or can discribe the "teddy bear pose"=20
> Son will go in for assessment in Oct. MD suspects CP. Showing signs,
> Heidi
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go here:
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>
> ------------------------------
>
> Date:    Wed, 11 Jul 2007 10:54:56 -0600
> From:    "Kendall D. Corbett" <[log in to unmask]>
> Subject: Re: Teddy bear pose
>
> Heidi,
>
> This page kind of describes the "teddy bear pose" and talks about a
> Mom's experience with her child's diagnosis with CP.  Are you new to
> the list?  If not I missed your intro.  I'm Kendall, 46 with CP
> secondary to hydrocephalus, and am married to Janet who also has CP.
> We're both 46.  How old is your son?
>
> http://www.epinions.com/content_3393888388
>
>
> On 7/10/07, Heidi Tibollo <[log in to unmask]> wrote:
> > Hi-
> > Does anyone have a picture or can discribe the "teddy bear pose"
> > Son will go in for assessment in Oct. MD suspects CP. Showing signs,
> > Heidi
> >
> > -----------------------
> >
> > To change your mail settings or leave the C-PALSY list, go here:
> >
> > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> >
>
>
> --
>
>
> Kendall
>
> An unreasonable man (but my wife says that's redundant!)
>
> The reasonable man adapts himself to the world; the unreasonable one
> persists in trying to adapt the world to himself. Therefore, all
> progress depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
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>
> To change your mail settings or leave the C-PALSY list, go here:
>
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>
> ------------------------------
>
> End of C-PALSY Digest - 10 Jul 2007 to 11 Jul 2007 (#2007-129)
> **************************************************************
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>


-- 


Kendall

An unreasonable man (but my wife says that's redundant!)

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all
progress depends on the unreasonable man.

-George Bernard Shaw 1856-1950

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