IT Morphine Trial- Ups and Downs

[Guest guest]

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I've been putting off writing this post because I have been beyond

overwhelmed. The trial actually started on 6/24/11

Please note that anything typed in CAPS is for emphasis, NOT to signify yelling.

I woke from surgery with NO noticeable pain in my legs! For a moment,

I questioned if I had died because I thought I could not be free of

pain until I died (I know, it sounds ridiculous, but that is how I

felt and what I was thinking at the time). A moment later, I felt (or

rather noticed) the pain from the surgery and realized I was probably

alive. I was still confused as to why I couldn't feel any pain in my

legs, I was then questioning whether or not I had bed paralyzed (I

know, it sounds ridiculous and paranoid, but it's me).

I processed to try to move my legs (to be fair, I have had trouble moving my

legs after sitting still for a while for over a year, but I guess that slipped

my mind). I couldn't move either of my legs, being me, I jumped to the

conclusion that something went wrong with the surgery. I always have problems

moving when I first wake up. The surgery went fine.

I had increased mobility until they turned my morphine down by

75 percent [2ml/hr to 0.5ml/hr]. They did nothing to help (I ended up

taking some Actiq and OxyIR that I brought from home because they

would only give me 10mg of OxyIR (the ditz nurse acted like 10mg of

oxycodone was some insanely high dose (I frequently take 90mg in a

single dose, sometime 120mg, and rarely 150mg; I am prescribed six

30mg pills per day for me to take however I see fit, although I doubt

my doctor [PCP] would approve of my taking up to 5 pills at once, even

tough he technically approved it).

When my surgeon came by for rounds, I was crying so hard that I could

barely talk to him. He said he was going to order an increase in the

oxycodone [he has no DIRECT control over the intrathecal morphine

dose, that is controlled by someone I never met, would decided the

dose [dose changes once every 6 or 12 hour]  solely on the pain level

that I reported every hour. Too bad he waited until more than 12 hours

after I told them I was in unbearable pain [18 hours after they

initially reduced the dose, I didn't realize until I woke up that it

was low].

My neurosurgeon forgot to order my increase in oxycodone when he left

the room and when I reminded them I needed it, they brought in 10mg

and the b**** of a nurse refused to call him to fix because I didn't

ask for any earlier. I loathe when nurses (and stupid nurses at that)

that know nothing about my medical history think they know better than

doctors. Everyday, I could not wait for the day nurse to leave so that

the night nurse, who was competent, unlike the day nurse, would take

over. NOTE: Please DO NOT think that I have any problems with nurses,

I just hate incompetent ones (I hate all incompetent people) and ones

that think they know better than the patient AND doctor.

They let the morphine bag run out twice and once the pump shut off

because of a huge bubble in the line (alarm waited until bubble was

halfway to my spine). It's simple math, you start with 48ml and you

subtract 2ml for every hours it is at 2mg/hr, 1ml for every hour it is

at 1ml/hr, and so on.

LATE Saturday night, my IV (hadn't been used for over 24 hours) fell

about 80% of the way out and I had to remove it the remaining 1-2cm

because it was just hanging there. It was a bit traumatic, but TOTALLY

worth it to not have useless, extremely PAINFUL IV in my hand.

When I woke up Sunday morning, I was feeling better, it turns out that

they had increased my dose to 3.0ml/hr of the 0.406mg/ml solution

(equal to 3mg of morphine per 24 hours). This turned out to be my

final dose and I have decided that I want to start my pump at 3mg/day

(or higher, if PM Doc wants me to reduce Duragesic right away).

My neurosurgeon came in for rounds around 1:20pm on Sunday (6/26/11)

and he told me we were done and that he was sending me home. ***record

needle scratch*** WHAT? Why aren't we implanting the pump, like I was

told when I scheduled the trial 2 1/2 weeks earlier?

His answer, infection. He wanted to give my body time to recuperate and let me

immune system rebound and he was VERY insistent that I had to wait.

The trial had been a VERY emotional thing for me [Two major reasons:

1) This was my LAST chance of pain relief 2) It actually helped] and

to hear that I had to wait for a pump was a lot to handle. My wife

ended up taking over talking for me as I couldn't keep going without

crying, again. After she explained everything, he agreed to do the

pump at the end of that week [Thursday or Friday]. I felt a little

better. NO, I STILL don't have the pump. He let removed the catheter,

which was one of the weirdest things I have ever felt.

My neurosurgeon absolutely will not manage the pump and neither will

my pain management doctor. I called everyone listed on Medtronic site

within 70 miles of my house. They either did nothing with pumps, only

implanted, or only dealt with baclofen.

I finally would an office earlier today (Wed 7/6/11) that will manage

my pump YAY! I can't schedule the surgery until after I see the new

doctor, so I should be getting a pump in September or October, unless

I can expedite the process A LOT or convince my surgeon to fill it

once.

The worst part is that I have been dealing with intermittent headaches

from a spinal leaks for about a week now. (I was fine for about 24

hours after the catheter was removed). I should to the hospital to get

a blood patch, but I just can't bring myself to actually go through

with it. I know it's stupid, but I'll go eventually.

-Steve M in PA, age 21

Duragesic 250mcg/hr

Actiq 600mcg 4/day

OxyIR 30mg 6/day