Another Pain Update

[Guest guest]

Sorry I haven't been posting much lately. I'm having a really hard time

handling the pain.

I'm scheduled to see my neurosurgeon on Tuesday about begging him to manage

a pump for me.

My PCP has been going behind my back and telling my current doctors not to

treat my pain because he is doing it, but lowering my dose. He told me and

my wife he wasn't prescribing at all and instructed us to try to get a

current doctor to accept me.

Apparently, everyone at my PCP's office thinks that I'm on too much.

My PCP seems to think that I'll feel better without the meds despite my

wife and I both explaining to him (aka reminding him, since he already

knew) that I was off them for six weeks back in October because of the

insurance company (at least then there was an end in sight).

When we explained that my BP skyrockets several times a day and I'm having

pain so bad that I vomit, he thinks it us withdrawal, but it is NOT.

Withdrawal is constant, not intermittent. This is so clearly untreated

breakthrough pain.

If I don't get Actiq or injectable opioids soon, this pain will likely kill

me. My heart is already showing signs of distress:

- Irregular heartbeat

- Systolic BP 180 during attacks

- Pulse well over 150

- Chest pains

If my heart doesn't give out, something else will.

I just want every single one of you to know that you have saved my life

several times over. Just having somewhere to talk or vent I'd a godsend and

your replies (from

those who're able) are what puts the help over the top and keeps me alive.

Without your support, I would have given up long ago. In saving my life,

you've also protected the lives of my wife, my daughter, and to a

[slightly] lesser extent my father.

BTW- The last two pain offices turned me down. I have nowhere to go. To

make matters worse, my Radiation Oncologist told my PCP that he doesn't

think my pain is caused by my cancer. He also told my doctor the size of my

tumor (2x2x3 cm) and the idiot thinks that it is no big deal because it

isn't that big. Anywhere else in the body, no big deal; in the brainstem,

HUGE DEAL. If it was really no big deal, why are they irradiating my brain

and dosing me with poison (aka chemotherapy)?

Is it just me, or is my PCP being a total a--hole moron?

Steve M in PA, age 22

Married with 4 year old daughter

Duragesic 300mcg/hr (q48hr)- Out on 4/4/12

Methadone 45mg/day- OUT since Jan '12

Actiq-1200 (4/day)- OUT since Jan '12

OxyIR 30mg (11/day)- Was out 1/18-2/27/12; Out again on 3/26/12

Grade II-III DIPG (Diffuse Intrinsic Pontine Glioma)

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... " )