----- Original Message -----

From: SDM

To: ptc@yahoogroups.com

Sent: Wednesday, October 01, 2008 8:19 AM

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