Pain pump, I have one, how about one for you?

Yes I've tried the pillow. Thank you for the follow up

I have had one for over twenty one years with a few problems that go with having one, but let me say that it was the only thing that helped me I have tried shots a spinal cord stimulator and that didn’t work so they did trial injections too see if that would work and it did, but let me worn anyone getting this it comes with it’s own problems first and most is constipation it’s been a problem from the beginning also for men you will probably need testosterone I have been on shots for over twenty years, but the worst is yet to come after 21 years I have a problem with my pump in February I woke up thinking my back had gone out after a few hours I called the nurse who did my pump for the last 10 years she had me come right in check my pump bye bye the way it was just replaced just before the pandemic started for the fifth time will come back to that a little later she checked it and said that it was okay and increased 10 per cent it helped but I was not where I had been so I keep telling them something was wrong so in late April they finally did a study to see what the problem was these pump have two ports one to fill but the second one they should be able to get fluid from they can use dye in it but I am allergic to it so they didn’t do that part so I go to the surgeon to get it done it took until May 26 before he did it in the meantime he wanted my cardiologist okay so now I have a stress test and failed so they want a heart catheterization they found that I had five arteries four were 100 percent blocked that my arthritis but that a story for a different time the doctor who did the procedure wanted to do something right then but talk with my cardiologist and they said fixing the pump and getting my pain under control was more important so they let me have the surgery but what none of knew was what the doctor who controls what goes in and how much planed to change it from what I have been on for 21 years it went from 15 mg pre milliliter Dialaudid set at 7.559 per day to 1mg per milliliter set at .0002 so it goes that is what I am dealing right now I have gone through drug withdrawals I got so sick I told my wife to put my gun away because I new what was coming and it was worse than I thought 7 days of vomiting and well you can guess what else you would think that would be the worst part but its not after making through all of that the pain has come back at first it wasn’t that bad but now I have not been able to sleep more than a hour the pain is so bad and my pain doctor is on vacation until the 5 of July so please make sure that you talk with the doctors who will be taking care of you and that you stay informed at all times because I did have one that the catheter had broken and when the surgeon was replacing the pump because it was time he found that the pump pocket was filled with something so he sent some to the lab clean up the rest put the new pump in and set me home so I am now looking for a new doctor to take care of me just ask a lot of questions and don’t take anything from them you are the only person that know what you are dealing and living with be you on advocate make some noise when they don’t listen.

Yes they can a little known thing is that that would probably help you because they make two different ones a 20ml and a 40 ml the batteries have come a long way from my first the pump is almost half the size it was when I got my first one so yes you should be able with out anymore problems the only thing is the girdle they put on you after surgery it’s only two weeks and if the pump is working you should be feeling better before you leave the hospital good luck

I have been using a pump for about 20 months. First morphine could not feel it then switched to dilaudid still nothing. Previously I had been using Fentanyl patch 25mcg/h and 4 10 mg oxycodone for many years. I get no relief from the dilaudid and I am at 1.39 mg per day after almost a year. Totally unhappy with this doctor. Had a fentanyl patch left over and it was applied and it was a miracle I felt the best I had in the last 10 years, when told doctor he got mad said it was illegal to use fentanyl with dilaudid and he could be thrown in jail, live in CT. Now I am back in hell.

Sorry to hear this. I was given a spinal injection with dilaudid before I got the pimp to make sure that was the right drug for me. 1.39 mg. is too low. I began at 3.6 and now I'm closer to 4 mg. Plus .9 mgs. that I can give myself in 10 doses over 24 hours, .09 per dose. Find another doctor. I'm not sure if the starting dose is determined by the oral or patch dose we were recieving before the pump. I do know that raising the dose too much can make the pump worse than useless leaving you in more pain than ever. Best wishes.

The doctor initially did a spine injection which was good for a short time. It is extremely difficult to find doctors, even my primary care doc did not want to help. From what I have been reading my numbers are low. This pain doc has placed my life in danger because I am scheduled for major open heart surgery next week and my pain med is severely inadequate. This pain doc has been milking the bills, it’s not Medicare or private insurance but a workmans comp settlement fund so he gets a lot higher rates. My previous dose was 1.25 mg a day and he increased it to 1.39 mg a day, a 11.7 % increase and he thinks it’s too much. I have a bolus device but would not let me use it a lot of times. What state are you located in?

I have a question. How do pain pumps work long term, like 20+ years? I am considering this as an option to buprenorphine which is limited, not to mention the bad side-effects.

Hello @geocpts @thoraxow and welcome to Mayo Clinic Connect.

@geocpts I am glad you've joined the conversation and already found some support through @wsh66. Have you shared your concerns regarding your pain medicine with your cardiologist?

@thoraxow have you had an initial consultation regarding pain pumps with a doctor or just starting to learn more?

I have a pain dr but just starting to look at options for long-term if I cannot get surgery.

After 5 years of being on the Medtronic pain (implant) pump I have to have a stimulator implanted in two weeks because the drug caused call shallow breathing and has reduced my lung capacity. It worked great for years but now I am dealing with other issues.