Intrathecal Pain Pump

Hi Brother,
Happy Holidays to you too. I have Dilaudid in the pump. Initially tried morphine, but had stomach troubles. Constant flow on the pump (40 ml pump) and concentration is 6.8 mg/day. I also have the flexibility to give myself 5 "boluses" per day if I'm having a bad pain day. The bolus feature also helps you keep ahead of the pain which as you know is critical.

Just a word of advice, this whole issue of mg vs ML vs dose vs pump volume capacity can be very confusing. Let the experts figure out the dosing and timing. I communicate in terms of "I need more pain relief more often" or "can we try a different opioid next fill??" I've even gone through periods of Fentanyl (don't waste your time). The positioning of the catheter lead is probably your most critical variable. Ask.

Finally, if things still aren't working, your body can actually grow tissue that impedes the medicine flow (called a granuloma)--again, something to check for if relief is not good.

That's enough--I appreciate meeting you and hope the best for you in the New Year.

Best--Archie

@heisenberg34 I was constantly discouraged for most of my first year and a half. My Doc was very conservative. And started me with true micro dosing after my trial. Keep in mind I’ve been on morphine. It was very frustrating. So, I kept complaining of no real relief. I was at 1.3 mg of morphine when she sent me to an associate for a surgical procedure to check if the catheter was clogged. It wasn’t. So he boosted me to 3.0 milligrams. Finally some relief. I guess he crossed a boundary she was to cautious of. After that I might get two, 15% increases a year. I was limited in that I had the 20ml pump. So concentration had to be adjusted too. I just got my pump replaced in September 2025. Now I have a 40ml and I’m at 12.47mg of morphine per day. Four 2.3 mg. Bolus flex dosing and 1.99 mg for 24 hour continuous. It keeps me at steady 6 level pain. I too enjoy a 3 month stint of level 4 pain. I’ve never been able to get there again. I have a lot of back issues that require interventional pain management, injections and ablations. When they are done on a regular basis I’m good unless it rains. Had fentanyl in the pump for 1 weekend, thought I was losing my mind. I’ve never been given dilaudid. But I’m getting ready to ask. I’ve attached some photos of what’s inside me. I’ve had 14 back surgeries, and a hip replacement. I also have a 16 lead SCS that I use on Tingle every night to help with the pain. My pump philosophy is that having it can be real frustrating nuisance. But without it, I’m a deadman walking. So I’ve learned to live with my discouragements, as they are temporary. It’s a forever thing inside us. And docs are afraid of going to far to help. At 67, disabled since 2005, I’m not afraid of going to high. What good is retirement if I can’t enjoy it. Hang tight, maybe interview a different doc if yours doesn’t listen. I should have answered this earlier in the day when my pain is lower. If I didn’t give you the message you needed, ask again, I have it. Wrong time for my response. Good luck 👍

@archie2 Thanks for getting back to me. When you say that you are getting 6.8 mg/day, does that include the boluses? Also, how long did it take you to get to that 6.8? I am only at 2.3 mg/day after two and a half years. I don't know why it has taken them so long to get to this point. Going up at 10% or 15% every three weeks or so seems so slow. I have seen other members who are at 4 mg or more. Just an FYI for any who are not aware: you can check your pump's info by clicking on the three horizontal bars in the upper left hand corner of your remote's display when giving your self a bolus.
Have a wonderful and blessed New Year, Archie!

@heisenberg34
Hi- Archie here— I was on sper high levels of OxyContin when I got the pump Got started at 5mg and never looked back. Over the years I’ve had increases from 10 to 15%. Several times to get to where I am today. The dose numbers do NOT include the boluses. You should never be reluctant to discuss your need for more pain relief with your Physician. At your low level you have a lot of room. I didn’t ask if you take oral meds for pain as well— I don‘t and this is important. Good Luck!
Archie

Yes it was in one shot. But I was way below where I should have been and I have a very high tolerance to morphine. When I got the pump in 2018, morphine for pain and baclofen for spascitity were the only drugs permitted. Never felt woozy, only a bit more pain relief. Yes, I’m the real $6million dollar man. And I also have an internal rod on my right calf bone( the skinny bone) from a spiral fracture I got in Boat sales showroom. I did get a great price on the boat! I hope to eventually change to dilaudid.

Ok Chris— you have to be ready to negotiate — suggest getting rid of the Tramadol — unless it is given IM, it’s a low level non-opioid solution. Get it gone. Pregablin is psychotropic solution that works well for some but, again, doing nothing (seemingly) for you. Suggest quitting it for more Dilaudid concentration in the pump.
The point is that there is no magic formula but the team has to be willing to titrate new answers. Good luck and let me know. Archie

@bilt4pain You got de boat, man! That's great. You may find that dilaudid will work better than morphine since it is about five times as strong as morphine. I would love to tell the Doc to push my pump from its current 2.3 mg/day up to 4. That's what they shot into me for the trial. Dropped my pain down to about a two. Chugging along, getting 15% increases every two to three weeks is so very slow. The wait in between is so very painful.
Have a blessed Christmas!