Seriously?!?!? what do i do now :(

[burdzmom]

so today I went to see the pain management doctor that I have been seeing at UPENN since October since leaving Jeff Headache Center.  I left Jeff after two years of the doctor eventually blowing me off and asking me if im under the care of a psychiatrist...... ***of coarse - I suffer a traumatic sudden onset and am in the trauma center with BRAIN surgery.....2 babies at home.....a dream job I cant do anymore....etc.....OF COARSE IM IN THERAPY!!! Grrrrrr.......anyway....
This doctor, who told my husband and I that he had "so many different options for me to try and different medical treatments and they would find out how to get me feeling better"........nope......not anymore. He changed his tune today. Now, it is " we have exhausted all options for a person in your condition and that my only option was to be treated by their staff psychiatrist to learn how to "deal with my pain".  WHHHHAAAATTTTT?!?!??!
Isn't a pain management doctor suppose to help you manage your pain??? That's why I was sent to one in the first place. Now there are no medicines that I can take because I have been on all of them and haven't responded to any of them. (As of today I am on: Lexapro, Abilify, Ativan and  Topamax. Then some OTC vitamins and stuff. That's it.) I have the WORST pain in the top of my neck, base of my skull and continuous headaches. ALL. THE. TIME.  I don't sleep.  I can barely interact and "act" normal around others because I get so uncomfortable, I have to get home to try and relax. I have tried numerous meds and some treatments that I haven't responded to - which is why I think there is something more to my situation.
After surgery - I had chemical meningitis and a difficult recovery. I never regained the coordination and strength I had on my left side prior to my surgery date. I have seen so many doctors because my head and body just seemed to fight whatever was going on. At one point I was referred to Rheumatology because they thought I had some autoimmune issues.  I have typical AI "flare up" indicators, but doctors tell me they don't think my levels are high enough to be that of a AI disease....... they think it is all related to the chiari and surgery.
So now I leave ANOTHER doctor -...... still in pain and continue to shop for one that can help.
I do not have a neurologist and my surgeon moved across the country.
I wanted to apply to the Chiari Institute for an appointment thinking SOMEONE there would give me some help but am not sure they will since I am post operative. thoughts??
Other than the Chiari Institute, I don't know where to go or what to do. Can anyone offer any thoughts?

Thanks!
Jilian

[The_beat_goes_on]

I'm so sorry you are dealing with this.  I just recently had my decompression surgery (on the 16th of December) and when I woke up in Neuro ICU I was already being treated like a junkie because I wanted pain relief.  I have never been so disappointed with a hospital experince (and I've had a plethora of heart issues that have required hospital stays / IV pain medication that nobody bats an eye at) ... the hospital staff literally waited for me to be hysterically crying in pain (sometimes leaving me this way for an hour or more) to give me my next dose of pain medication.  I leave the hospital early because they aren't taking care of me and I end up with aseptic meningitis (is that the same as chemical meningitis?) ... so I'm in even MORE pain and go to the ER, and once again, I'm treated like a drug-seeker, and am crying because it hurts so bad.  Even though my CT scan shows abnormal fluid collection at my surgical site, they do not take my pain seriously, and again, I leave with no relief.

My neurosurgeon has prescribed steroids and told me to double up pain medication .. but now I am terrified of having this pain last ... and nobody taking it seriously.  It's much worse than any headache I had pre op, and those were bad!!!  Who sent you to a pain management clinic?  my NS said he does not prescribe pain medication outside of the hospital, and I can only hope my pain goes away before I run out of medication .....

[girlinxile]

Has the Topamax helped your headaches? If it didn't.. I would look at that. The side effects include feeling anxious and sleepless and j had many severe neuro issues like stutter step and problems with coordination. I really hope you find a doctor and soon! I cannot imagine how frustrated you must be! Good luck!

[desertstorm2009]

So sorry for how you have been treated. I can't pretend to know the cause of your pain post op.... But I do know a Dr who can and will help you. Please call Dr Oro in aurora, Co. He helped my daughter and now me. He fixes many surgeries done incorrectly by others. Not saying that is your case, but I know he has helped many when other NS have written them off. As far as the meds go, they have never cured this and never will. In fact I believe they make matters worse in some cases. Good luck to you my friend. You are not alone as I sit here and suffer with this head ache along with you :-) Lisa

[selmaS]

   Jilian u deff are not alone as so many do not have support outside this forum......and u need a Dr u r not only comfortable with, but is well experienced with Chiari and related conditions as they all need to be ruled out, DX'd and dealt with.

[burdzmom]

thanks so much for your support Selma. I really appreciate any support right now. I hate this fighting alone stuff. being in the community is all the support I have :)

Merry Christmas
Jilian

[selmaS]

  Hi...I am so sorry, there are so many Drs that have no idea how we are affected by this condition and push us off on other Drs as they have no idea what else to suggest....

An opinion from TCI....go for it....yes, it  does not matter u r post op...they help those that have issues post op and those that have not had surgery.....so deff take a chance and contact them....

It is possible u have an underlying condition not yet DX'd.....

Keep us posted and have a Merry Christmas <3