in your case you have held off as long as you can. i know i am waiting
out to see if loosening a 75 pounds helps mine because thats what they
told me they want me to get the shunt but i am waiting till the last
possible moment to have it i will continue to have spinal taps every 3
months if i have to so far i have only lost 20 pounds in the last year
and that is on Topamax Diamox did nothing for me but make me sick.
it sound to me that you have gotten to your last option and that is
the shunt.you lost the wait your doing pain management you've done the
options i think i know you may not want to and i know when the time
comes for me i won't want to ether it may be what you need to do.
if not for you do it for your kids.i feel for ya i do i tearing becase
i know how you feel it sucks you don't want the hard ware you hear all
this crap of how bad they are i want to hear some good. well i don't
think i was much help but you are not alone in this sea and i found
that you find a few bad doctors who just suck and don't realize that
we live with a this everyday not just every three mounths when we com
in for a visit.
Carol
-- In ptc@yahoogroups.com, jma2317@... wrote:
>
> Sabrina,
>
> I am sorry for all your frustration with this PTC crap. I understand
how you feel to certian extent. I am not on pain meds but I was given
them before being diagnosed. They actually made my pain/headaches
worse to the point of vomiting.
> I know we all have our days when we feel overwhelmed, a little
bitter and feel as though you have no hope left. I understand your
frustration with the pain medication incident(s). You need to
understand that addiction is a sickness. Most of these people who are
or became addicted to pain meds were taking them while under a doctors
care. Chances are they were not trying to assume you are an addict but
need to take percaution because long term use can cause addiction
without you even knowing it.
>
> Im sorry, but your post hit a spot with me. I have had a close,close
family member deal with an addiction to pain med. I can assure she is
NOT a bad person, and didnt do it on purpose. Im dealing with PTC and
my mother addiction.... So, before you fly off the handle and blame
others for situations you unfortunatly had to have a part of- please
think of this- You are not the only one fighting a battle, PTC is hard
to deal with, so are ALL sicknesses. There are people out there who
are told every day by a doctor that they ONLY HAVE about 6 months of
thier life left..before dying. Atleast we have life!!
>
>
> Life may not be pleasent all the time but IT IS what we make of it.
>
> Good luck and God bless you!
> ~Jessica
> Sent via BlackBerry from T-Mobile
>
> -----Original Message-----
> From: SDM <alaisblue@...>
>
> Date: Wed, 1 Oct 2008 05:19:11
> To: <ptc@yahoogroups.com>
> Subject: [ptc] Scared of a Shunt
>
>
> 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
>