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Laura:
You might want to go to your neurologist & tell him what is going on. While a lot of people have nothing but negative things to say about neurologists, I've had several who were excellent & who did help me a lot. I've also had neurosurgeons who got stuck on one way of thinking & needed to have that second opinion to jar them loose from that rigidity.
I had a neurosurgeon, when I was 14, who couldn't find any reason for my hydro headaches, so his solution was a revision. He actually told me that I would be dead in five yrs if I didn't have the revision, so of course I had it. I had the revision when I was 15. Six years later, I had a staph infection in the shunt tubing & had emergency surgery to remove it. My new neurosurgeon looked at my files & said there was never any indication for the 'need' for the revision!!
If YOU think that you need a second opinion or you don't think you are being listened to, do whatever you can to do what is best for you. A good doctor, of any specialty, shouldn't have a problem w/a second or even a third or forth opinion.
Best of luck!
Diana
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 PozziSent: Tuesday, May 27, 2008 4:58 PMSubject: 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@yahoo.com> 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. , "Joel Hug" <joel@...> wrote:com
>
> 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. , "elana_schwartz"com
<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
> >
>
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