Diana & Laura,

I have been to my neurosurgeon (last appointment was last August) and
he confirmed that it is difficult for me to tell when i am getting
migraines and when I'm having a shunt-related headache - until it gets
to a certain point then i know it's malfunctioning/clogged. This is
why he sent me to the neurologist. I am just frustrated because i'm
still in pain and my last appointment with the neurologist 2 months
ago he said that it was chronic headaches and while the shunt is
working he does believe it's connected to the hydro (but that you cant
always tweak a shunt unless it's really a big problem). My last MRI
which i took last month seemed ok ... I just get concerned because
I've had CT scans and shunt series which show everything is fine when
it's been clogged or malfunctioned and my neurosurgeon knew my scans
can seem fine and sent me for another test which proved it wasn't
working. I have to have faith that an MRI will show a problem since
it shows a clearer picture.
Fortunately, my neurologist works with my neurosurgeon -- that's why
I go to him because the nsg recommended him and i know the 2 consult.
And, he seems knowledgeable with hydrocephalus
What is ICP monitoring - I've never had that nor has it ever been
mentioned to me by either doctor. At the moment i'm still searching
for a good general practitioner that i can keep as my internist but
have yet to find and someone who is closer to where i work.

Elana


--- In hydrocephalus@yahoogroups.com, "Laura Monahan" <lmripple@...>
wrote:
>
> hi Diana,
>
> That is what my ns told me that i was having migraines. But when i
had an icp motoring study my icp went up to 60 at times and while
laying flat it raised to 20. and sometimes spiked to 40 in different
positions like laying on my shunted side. but my ns says that that was
normal and did not do a revision. I Keep calling his office and
telling him that i am having problems and he says that they are
migraines and to go and see your neurologist. i do not think after
that icp test that they are migraines. and he has no notes of that
ttest to send to my family practice doctor to get a second opinion.
except normal test no opening pressure nothing.
>
> Laura
> ----- Original Message -----
> From: Diana Pozzi
> To: hydrocephalus@yahoogroups.com
> Sent: Tuesday, May 27, 2008 4:58 PM
> Subject: Re: [hydrocephalus] Re: Migranes! Need to Vent!
>
>
> Elana:
>
> First, I would make sure that these are migranes. Quite often
members of the support group I belong to have had hydro related
headaches misdiagnosed as migranes. Sometimes the symptoms can be
similiar--light & hearing sensitivity, nautiousness, etc. I've also
had that happen, but I don't have migranes, so I knew that wasn't what
it was. But I've had medical professionals refer to them as migranes
when they should know better.
>
> You might also want to find a neurologist who specializes in
migranes. My former neurologist had a lot of clients who DID have
severe migranes. But I was fortunate, he knew the difference.
>
> Hydropr61
>
> elana_schwartz <elana_schwartz@...> wrote:
> Thanks Joel for your email. Yes, they are very annoying (and painful
> at times) yet I have continued to go about my life. I've always had
> headaches somewhat - and I'm not sure if I've just paid more
attention
> to them since my last revision 2 years ago (I had 2 within a 3 week
> span) or if they've gotten worse in terms of migraine symptoms. The
> last time I was at the neurologist he said that i was suffering from
> chronic headaches with the key of trying to make me more
comfortable -
> which some days I don't find easy.
> I have had a total of 7 revisions since my shunt was first
placed when
> I was 3 weeks old... I have had 1 infection - which was why of
all my
> revisions i had 4 within a year and a half span. Still, I've managed
> to graduate college, graduate school and now work full time.
>
> Elana
>
> --- In hydrocephalus@yahoogroups.com, "Joel Hug" <joel@> wrote:
> >
> > Elana,
> >
> > I sympathize with your migraines. I had one that lasted for
almost 4
> years when God
> > healed them one night almost 3 years ago. Without knowing your
> beliefs, can I pray for
> > your healing? I have congenital hydro and went through 3 surgeries
> during a 2 year period
> > while I had the migraines.
> >
> > Joel
> >
> > --- In hydrocephalus@yahoogroups.com, "elana_schwartz"
> <elana_schwartz@> wrote:
> > >
> > > Sorry guys but i decided for once I need to vent ....
> > >
> > > I've had such a hard 3 weeks with really bad headaches -
where I've
> > > had periods at work where I've had a hard time
concentrating. After
> > > seeing my neurologist yesterday he decided to increase the
Neurontin i
> > > am taking as a "preventative" medication to try and cut the
cycle of
> > > getting these really bad headaches on a daily basis. These
headaches
> > > had gotten so bad that i left work 2 hours early one day and
took off
> > > another day. Luckily, they are really understanding at my
new job and
> > > my chief of staff actually know a bit about hydrocephalus
and shunts
> > > when i told her.
> > >
> > > My appointment at the neurologist yesterday, made me feel a
little
> > > better in that he said that my shunt seems to me working and
the key
> > > is to try and minimize my headache pain... but he does feel
that the
> > > chronic headaches are related to the hydrocephalus but you don't
> > > always want to play with the shunt he said (unless it's
clogged or
> > > malfunctioning). In the meantime, we've increased my
headache pills
> > > as i said before and i go back for a follow up in 6 weeks
and have to
> > > get a dreaded MRI again beforehand (just to make sure that
the fluid
> > > in my neck is no longer congested).
> > >
> > > Still i hate the headaches and they have kinda put a damper
on my mood
> > > and willingness to be as active (when these headache hit)
> > >
> > > Thanks for the vent!
> > > Elana
> > >
> >
>