Intrathecal Drug Delivery Pump for Pain Control

[metronycguy]

wonder how your doing, either very bad since you haven't been back, or your doing great and are busy doing things you couldn't do when you had all the pain

[SCI-Nurse]

paraparajumper's last visit to CC was on 9/16.

(KLD)

[metronycguy]

i have my pump implanted in march and almost every month we try and fine tune it, this was expected. I did have a lot of pain the first month and i was told to expect this and take the oral meds prescribed.. I was told to stop the methadone on the day the pump was implanted, 40mg a day,, i did that without any noticeable problem. I was nauseous and throwing up for the first couple months, took the morphine out of the pump and started hydromorphone , no problems since.
i was giving a Rx for Narcan and told to carry it on me ,, i havent found a way to carry it and be accessible yet, need a back pack with an extra pocket

[nmireles]

Did you get the metronic pump with the bolus feature?

[metronycguy]

no I have the flowonix pump with bolus, allegedly it has better basil dosing, more accurate dosing http://www.flowonix.com/patientcare-giver

[paraparajumper]

I have been in worse pain since the pump was placed. We've titrated 4 times now. If something doesn't change very soon I want the pump removed.

I'm getting fed up with my life. Absolutely sick of it.

[nmireles]

cool thanks for the heads up. I have to have another surgery and put in a new pump in 8 months. The battery is about dead so that's why I am asking questions.

[nmireles]

Parajumper that's weird sorry to hear man. Curious what medication are they administering through the pump. I have hydromorphone in mine.

[metronycguy]

paraparajumper ,Sorry to hear this, i would think something has to be wrong with the pump if it isnt working on your pain, like the actually pump mechanism isn't putting out the correct dose. You have oral opioids to take right ?

what med is in your pump? i also have hydromorphone, i had nausea and puking with the morphine so was changed to the hydromorphone, the pain control with the morphine worked pretty well. the control with the hydromorphone is very good

paraparajumper Aren't you taking oral opioid meds while the pump is getting to the right dose? I was the whole time and still take and carry oral hydromorphone, plus i still take lyrica . I just had my pump filled and reprogrammed with a different level this week, they made sure i had enough oral hydromorphone to get through the first 56 hours after reprogramming, because the pump bolus is locked out for those hours and the medicine in the 1 meter long catheter going to my spine will get pumped under the new stronger concentration , but smaller dosage., therefore i will be getting less medicine via the pump and will need the oral hydromorphone to manage the pain for those 56 hours .
For a long period the bolus were not covering my breakthrough pain and i had to take orals also, i made it 10 days without any orals opioids at this refill, so that was a very good sign. i'm a HALO jump failed

[Madnance]

Well, i started this thread and decided not to get the pump. My doc tries cymbalta on me and it really helped. Have been off opiods for 6 yrs now, just use cymbalta, gabapentin for pain. I still suffer with some pain in mid back but as long as i am active its tolerable. You are all amazing for navigating this messy and frustrating sci journey.

[paraparajumper]

Interesting to look back at this and realize where I was. I don't know why the initial implantation was so incredibly bad, I think it was simply the post-operation nerve pain related issues with a SCI, especially after they fed a catheter near my level of injury. Most people are able to go home same day, I literally couldn't move and was in the hospital bedridden for 3 days. There were no issues regarding pump or catheter placement, so I can only guess.

The doctor that put in my pump I ended up leaving and it couldn't have been a better decision. He was unbelievably set in his ways and refused under any situation to provide any oral rescue meds. I ended up getting him to write for a measly 4 doses of Nucynta 100mg ER per month before I said "enough is enough." We went the anesthetic route which made my pain worse. Bupivicaine knocked out the rest of my bladder function, the rest of my motor in my single right stump (it just hung there and got in the way during transfers), and my pain felt like a deep and visceral pounding feeling. We pulled that and tried some low dose Baclofen (it was shown in some studies to provide analgesia) which made my anus burn. The worse part of my pain stems from the anus.

Eventually I ended up with my current doc who runs another clinic and I couldn't be happier. I've been "stable" pain wise for a few years now, There's still bad days, but nothing like I stated earlier in this thread. I'm on a combination of orals and pump meds (only thing in my pump is Morphine). We've turned the pump down a little and we'll continue titrating down to see if there's a potential to come off of it eventually.

[metronycguy]

i happened to log in today and catching up on carecure. my intrathecal pump is working well on the pain, i rarely need a bolus and will go weeks without the need for oral BT meds, i still take lyrica 3 times a day, whichIMO helps a lot.
mmj was also added to the mix, i like it for anti anxiety properties.
my main problem is a loss of appetite,nauseous, no desire for food, my pump medicine is hydromorphone .
MMJ help a bit with appetite but i cant smoke all day long
just catching up with old posts