ok, i thought one had to start a new thread if you started a new question. sorry, brand new to this as I just joined this site three days ago.I just saw all the different threads and comments and thought that was the way you were suppose to do it.
I have been with my pain doc for I guess its been over four years now. He was the end of the line after seeing 13 others from primary to ent's, neuro, headache,psych,and finally pain management.When I started with him I was still on percocet which my primary started me on in '01. I had been through all the antibiotics, allergy meds, ear tubes,seizure meds , psych meds for pain etc and he again went to the seizure meds again at higher dosage( kepra, topomax,etc) w/ no effect finally landing on actiq which worked. We had tried all of the nerve blocks in the forehead as well as the ganglion block just above the collarbone in the right side of the neck which was scary as it left me unable to move my right arm, breath deeply or cough for 3 days until it wore off. Unfortunately it did nothing. I also agreed to have cryoprobe to the supraorbitalnerve done. The first time I went in for this the machine was broken so they had put me under and the next thing I knew I woke up completely draped listening to them all talking about how sorry they were but it was broken so I would have to come back again some other time. The next time I came for my scheduled cryoprobe , we got there at 6 am as we were told and were told we weren't on the schedule but I insisted that I had been called the day before and told to be there, was told to wait and they would squeeze me in. I was taken in at 7 and at noon was taken back for the procedure. This time the procedure seemed to offer some relief for a few months. I was scheduled to have it done again 5 months later. I got there for my procedure and was told that my doctor would not be there today but his collogue would be performing the procedure.
Do you know how those little hairs stand up on the back of your neck and how you should listen to them? Well those hairs were standing straight up but I ignored them, I assumed that if my doctor, who I did trust, trusted this man to do this simple procedure, then I should too. After waiting agin for another 5 hours to be taken back, because it was the day before New Years ( I still don't understand that)I was wheeled into the operating room where the anesthesiologist went to administer the versit to put me under "blew" the vein and shot it all into my arm instead of my vein. I heard her say "darn" and then I heard the doctor ask "does she need to be under" I said YES SHE DOES from under the drapes. I swear to you all, I am not making any of this up. I now know in hindsite I should have bolted from that table, I should have run from there but I think like many of us being raise in the 50's I was taught that the doctor is the hero and always right so I just needed to lay there and behave. Anyway, she found another veing, got me under and the procedure went on. I woke up in recovery went home and the next day the cryo di indeed seem to help once again but I woke up with two very black eyes and looked like my husband had beaten me. When I went to the follow up appointment with my pm a week later he asked me what happened, I told him and he said he would not have gone through with it. I told him I did not know he wasn't going to be there and his only response was "oh , I thought you knew". Cryo worked again for awhile but I was still on actiq for b/t and it was working.Then came the terrible news last year when all the insurance companies would no longer pain for Actiq unless one had an end stage cancer dx so we went to msir, oxy ir, er, lyrica and another that starts with a f or p but for the life of me i can't recall( has caffene in it) .It was a year ago this past July that I finally asked to go back to the Actiq even though I had to pay out of pocket. Then came the awful experience with the opcipitol nerve stim I spoke about on the other thread. That has brought me here. Currently I am on opana, norco for b/t. lyrica, topomax, prozac, ambien,zocor,ketorac,. When I go to his office , I don't just say I want "this or that, but bring in printouts from website or documentations and ask "so what do you think?, more of a " this is what i found, what do you think?"
I was a caseworker for developmentally disabled and mentally ill adults for 10 years. I had a caseload of 23 schitzophrenics, sociopath, etc.. When I took my clients to doctors and psychiatrits, over the course of years we would establish a bond where they would treat me as a collogue( boy, i can never spell that) and ask my opinion, what did i think, what did i see, how did i view the client, were the meds working, did they need an adjustment etc..I find it AMAZING how it has changed now that i am the patient and how I have suddenly beome stupid or suspect. I still have the same mind, I still do the same research but now I am advocating for myself, probably my most important client because I want nothing more than to be able to get back to them. You have no idea how I worry for my clients as I sit here rambling around this house. anyway.
all this "drug addict" wants to know is, what are you using, hows it working for you and maybe I can suggest it to my PM, get a dialogue going with him about it and hopefully some day get back to "my guys" and see how they are doing
sick and tired of being sick and tired