Pain Update

[Guest guest]

Thanks in advance for everyone who reads this. I know these rants

aren't exactly fun to read, but it helps to have someone other than my

wife to talk to about this stuff.

So, as many of you may already know, I've been having some issue

obtaining prescriptions for my pain medications.

10/25/2007- First put on prn opioids

March or April 2009- put on fentanyl patch / started round the clock opioids

10/21/2010 My first appointment with Pain Management (also my 21st

bday)- My PCP agreed to continue prescribing my pain medication as a

condition of my agreeing to go to pain management

10/21/2011 My PCP writes a letter stating that he will no longer

prescribe ANY of my pain medications

11/1-7/2011 I receive said letter and inform the pain doctor (Dr. H)

Dr H starts prescribing my pain medication because he has no choice,

but he makes it clear that he is not happy about it. He secretly

starts looking for a reason to kick me out of the office.

01/16/2012 I have to cancel MY appointment because my ride (my wife's

father-in-law) falls and ends up in the ER. I ask to reschedule it,

but the front desk tells we that since I was just there a month ago

and I had an appointment scheduled for February, that I should just

wait until then for an appointment (they didn't have any appointments

available). THAT SAME DAY, they discharge me from the practice for

failing to schedule monthly appointments.

01/20/2012 I run out of methadone and oxycodone

~the doctors start playing chicken with my life

~The idiot my PCP and his nurse suggest that I ask my Radiation

Oncologist for my pain medications

NEW STUFF!!!

02/23/2012 I am sent to an interventional pain management office, but

" interventional " isn't in the name and no one warns be (or apparently

my doctor) that this is an interventional only office. So, I drag

myself into the office and after 30-45 minutes of paperwork, 5 minutes

waiting to be called, 5-10 minutes with the nurse, 10-15 minutes

waiting, 30 minutes with the doctor, the doctor leaves the room to

contact my PCP. Wait 20-25 minutes. The MD came back to tell me that

they had no idea that I have systemic pain and that he called my PCP

to find out what they wanted him to do. He starts poke and prodding

again, eventually stirring up a full blown pain flare, then darts out

of the room while telling me to wait. I waited another 1.5-2 hours

(thank god my dad came, I'd have gone insane if I was alone). A

receptionist comes in to tell me to go ahead and leave, they'll call

me " tomorrow " . [3/2/12- still no call]

02/24/2012 My wife called my Neurosurgeon about the possibility of

him managing an intrathecal morphine pump for me

02/24/2012 SLEEP

02/25/2012 SLEEP and I ran out of Actiq-- THIS IS HELL

02/27/2012 My wife calls PCP (Dr. P)- After an hour on the phone of

them going back and forth, he suggested that my wife should put me in

a detox center " so that it is easier " (as if we give a damn about it

being easier for that jacka**). After that, my wife reminded him that

I am going to start Chemotherapy or Radiation Therapy. He agrees to

prescribe " just enough oxycodone to keep him (me) from getting TOO

sick " . I still have nothing useful for breakthrough pain (oxycodone

doesn't work very well for me, especially when I can't eat the

necessary high-fat meal to get my body to metabolize the oxycodone

into the active metabolite). He makes is ABSOLUTELY CLEAR that he will

not prescribe anything else after this. My wife asks him about pain

management referrals, and he says that there are TWO offices left that

haven't made their decision about accepting me, but " it doesn't look

good " [every other office said 'no']. My wife asks, " So, what do we do

then? " , Dr. P never answers. ~At some point in this conversation, my

wife mentions that Radiation Oncology does not prescribe any

medication (Radiation Oncologists aren't Oncologists) and Dr. P says,

" Yeah, I know " .

02/28/2012- My wife finally talks to the Physician Assistant (PA-C)

who works with my Neurosurgeon. She convinces him to schedule an

appointment to discuss to possibility. Earliest appointment available

is almost 3 weeks away.

03/19/2012- Appointment scheduled with Neurosurgeon

03/26/2012 I run out of oxycodone, AGAIN

04/04/2012 I will run out of Duragesic [if I keep my current dose]

05/04/2012 Longest I will be able to stretch my Duragesic supply if I

taper it down to 100mcg/hr

Steve M in PA

Duragesic-100 3 patches every 48 hours

Actiq-1200 (4/day)- OUT

oxycodone 30mg (6/day)- Adjusted

methadone 10mg (1.5 3x/day)- OUT

P.S. I know that this is kind of morbid, but I have to say it, just in

case. It has become clear that there is very little chance of anyone

prescribing my pain medications and without them, I will die. Even if

I can prevent withdrawal, the pain itself will probably kill me

(Intractable Pain can wear out my heart cause heart attack, or

stroke). I'm going to do whatever I can to prevent it (even if that

means a visit to the Emergency Room), but it is still a very real

possibility. If this happens, I want everyone here to know that I

greatly appreciate you and your posts. Without these groups, I

wouldn't have made it this far. Thanks you for your kind word and

support. Thank you for posting questions that I have been able to

answer, which has made me feel useful/helpful. Thank you for giving me

hope when it was in very short supply. Thank you for being my friends

(The theme from Golden Girls just popped into my head, " Thank you for

being a friend... " )