I'm so sorry you are going through this. I understand where you
are, but don't let anyone push you into something you don't want.
If it's just because you're afraid of the procedure, find a NS you
are comfortable with. If it's that you truely don't want a shunt,
then that is your right. It can even be hard finding a NS to do it
because many of them don't believe it will help.

As for me, I had my first VP shunt placed in January. I've had 2
revisions since. As for the HA pain, most days it's more tolerable
than it was before surgery, but I'm still on pain meds. Then there
are the days it's just as bad as before.

Shunts do miracles for some. If you decide to go ahead with it, I
hope you are one of the lucky ones. Just go into it with your eyes
wide open! This IS brain surgery, complications are always possible
as are revisions. Make sure it's what you really want, and make
sure your NS is on the same page as you are and will be willing to
work with you as far as adjustments, etc. go.

Best of luck in your decision.
Kathy

--- In ptc@yahoogroups.com, SDM <alaisblue@...> wrote:
>
> I have had PTC for over 2 years now and I feel defeated.  I had
bariatric surgery and lost well over 115 pounds and while my
papilladema went down, it won't go away.  The head pain has /never/
changed.  I am in constant pain and had to fire my previous
neurologist because she didn't know how to treat me after the weight
loss failed to *fix* my disease.  The neuro accused me of being a
drug addict and I was so angry I had to go back and prove my
innocence, go off of pain medicine, go into the hospital and get 3
other neuro's who all saw that I still had papilladema before I
could even begin to get back on the right track.
>  
> I now have a pain management dr - but he is in a hurry for me to
have shunt surgery so I can stop taking pain medication.  I just
started pain patches because very low doses of oxycodone don't work
well for me.  I realize some people have problems getting treatment
for pain at all for this disease - and I'm sorry for those people. 
But I'm in bed every day.  My new neuro optho doubled my diamox and
since he did, all I do is sleep.  I can't even get to the grocery
store.  My kids miss me (they are 3 & 4) and I'm worthless to
everyone because I'm in pain and dizzy and just flat out tired.
>  
> I am so sick of being sick.  Nothing has worked to get rid of this
disease that came out of nowhere.  PTC will NOT go AWAY.  I am SO
FRUSTRATED!!!
>  
> So, my pain mgmt dr is in a hurry for me to get a shunt.  Nothing
else has worked to take my head pain away that should have.   spinal
pressure is "normal" according to my tap in January.  I am petrified
of shunt surgery.  Another painful surgery that fails would break
me.  I feel like there's no hope for me.  Everything we try fails --
and no one wants to hand out pain medicine because they think you're
a junkie trying to get a fix.
>  
> Well what the hell?  I HATE TAKING PILLS OF ALL KINDS!!!  Why is
it so hard to believe that I hate pain medicine?  I truly am at the
point that if I'm going to be stuck in pain, I may as well go off
all pain medicine and just be stuck in pain.  At least that way I
don't have to go through another painful surgery just to prove to
the dr's that it won't work.  And I don't have to deal with anymore
acccusations and bullshit of having to prove that I'm trying to not
be in pain - not trying to get high.
>  
> And for the record - if anybody of you knows someone getting high
off of pain medication - I hope you turn them in.  For those of us
who are actually in pain and trying to get help - those people RUIN
our lives.  They make EVERYONE a suspect.  They deserve jail time
and major rehab and should have to pay damages to people like us for
all the HELL we go through just trying to get through the day.  Yes,
I said it - PAY damages - because how else are they going to learn
their lesson?  I'm so sick and tired of being whined to about "I was
an addict, I couldn't help it." when I read people's stories or even
blogs.  Drug addicts do SO much damage to everyone around them -
they deserve a lot more accountability than just 'poor me - I'll go
sit in rehab that taxpayers or my daddy paid for (but notably always
someone else's hard work being spent) and just relapse when I feel
like it.  These idiots have made my life a living hell.  I swear if
I ever run
> into a person sucking down pills illeagally I will knock them
out, throw them in my car and haul them to the nearest police
station. 
>  
> I personally have only ever run into one such person and she was a
neighbor with major problems.  We moved.  I'm not a snob but I don't
associate with people who blame everyone else for their problems and
then lie, cheat, steal and break the law as a daily habit.  Just a
life choice.
>
> I'm sorry to rant I'm just so angry.  I'm so damn tired of being
sick and fighting for the right to NOT be in pain.  I had two babies
back to back and then got this illness that just won't go away.  I
feel helpless.  And every time I have to go see the pain dr he wants
to know when my appointment for surgery is going to be.  In other
words, if I want to be out of pain, I need to try surgery.  I don't
want anymore surgery.  NOTHING HAS WORKED FOR ME THAT WAS SUPPOSED
TO!  I don't WANT to be cut open again.  But if I don't agree to
surgery demands - I won't have any pain medicine and so I'll be even
worse off than I am now. 
>  
> I feel so backed into a corner and I'm terrified. 
>  
> Any advice?  Did anybody else have everything else fail and shunt
magically work?
>  
> Please advise if you can ...
> Sabrina
>