What was your experience with a pain pump?

Posted by twa1965 @twa1965, Feb 16, 2022

Who on the platform has a Pain Pump? What side effects did you have, if any? How much did it reduce your pain? What was the recovery time for surgery?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

After my pain returned after being well-mamaged for about 3 years, I tried just about everything known to man. The pain pump was sort of "the last straw". I had it installed back in April after the second trial with hydromorphone dropped my pain level from about a 7-8 down to about a 2. I had to have the pump output readjusted 4 or 5 times before I began to get decent pain relief. A month ago I had a week where I was feeling pretty good... pain was down to a 2. Then, about a week later, the pain returned. They checked the pump with a dye, and it seems to be working fine. I will have the output readjusted again next week. This has been a real rollercoater of an experience. Not sure how higher they can go.

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@heisenberg34

I had my Medtronics pain pump installed back in April after just about everything else failed. I had to have the output adjusted 4 or 5 times before I felt any relief. A month ago I was feeling pretty good, pain level down to about a 2! Then about a week later, the pain began to return to about a 7. Even with a bolus, the pain is mitigated very little. I have had two additional adjustments with little effect. When they refilled the pump two weeks ago, they used a dye to trace the output to make sure the pump was working OK. All is good. Do you remember haw many readjustments you had? I am receiving hydromorphone. That was the drug that worked the best during the trial.
I also am taking gabapentin, diazepam, Diclofenac K, and tramadol. I had managed to wean myself off tramadol during the week that I felt so good. But, with the pain returning, I had to go back on it. Sorry to be rambling on, but I am feeling pretty discouraged at this point. Hope you can shed some light on your experiences. Thanks.

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I had changes throughout the years up and down. Dr. Kuharich is going to add in additional drug to help reduce the nerve pain as this is getting worse and I don’t want another surgery on my spine (I have had 8 or 9 back operations). I have found the Medtronics pump has helped me the most over the years.

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Do you remember what drugs they are using and what dosage you are finally receiving? I am getting hydromorphone and I think I am just over 4 mg. I have had the pump readjusted upward 5 or 6 times since April. The bolus helps a little but not significantly. Did you ever have the bolus amount increased? Please excuse my ramblings, but I am still a newbie at this thing.
Thanks for your input. I'm glad to know that there are others out there trying to get this thing regulated. I hope and pray that you have many, many days of minimal pain!
Chris

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@twa1965

I am about where you were in your journey and thanks so much for the reply. My trail was last week with morphine, but I had a rough time trying to pee. Was that an issue for you at all and does it get better?

How long were you down from the surgery? It’s not that bad?

Thank you again for replying!

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Just an FYI... I had the pump trial with direct injection into the intrathecal space. First trial was with morphine. Did not help. Second time was with hydromorphone, which helprd significantly. Like you, I had difficulty going pee. Also, after the injection wore off, I vomited six or seven times. After a year of living with the permanent pump, I have expereinced virtually no pain relief. Hope you have found help.

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@morkat

Hi! I am on my second pump (morphine) It has given me my life back. By the time I needed the pump I was running out of options. There was no more surgery they could do, the shots don't work for me, so it was meds by mouth. I was quickly facing my limit and was asleep most of the time. After the pump, I could get out of bed and start my day. It takes 90% of my pain away. Every disc in my spine is compromised. My neck has been rebuilt, my knee, shoulder, and both hips are replaced. You need to do what your told and make the adjustment to this. I take 1 300th of oral painkillers. The surgery is same day and not difficult.

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I have had my pump with hydromorphone for over a year. Morphine did not test well. HM test shot brought pain down to a 2 from an 8. I was expecting good things from the pump. However, I have not received any pain relief to date, even after having its output adjusted upward more times than I can remember. What exactly is the upper limit dosage of HM from the pump? I don't want to have an unsafe dosage. I am hoping my pain doc knows what he is doing.

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I have had mine for over two months now and the relief from the pain is , most of the time, 100%. After surgery, I had spinal headaches for a week or so, but it went away. My life has changed dramatically. I have to remember, this jewel does not cure, it covers up pain. If I get too frisky, I can cause some of my pain to come back and remind me to be grateful for the pain relief and remember I am 80 yo and need to give up on yard work, etc. Best item for chronic pain I have ever experienced.

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I wish you all the best in your battle with pain and I'm sorry you even have to go through this.

I have a question. Someone mentioned using hyrdomorphone. I think that's a man-made morphine/opiate. Does tolerance become an issue at some point and if so, what do you do?

It sounds like people do ok on very low doses for a long time, and that's good. Just wondering what people do if or when the dose is not effective.

Thank you all - and the best to all of you. Joe

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@heyjoe415

I wish you all the best in your battle with pain and I'm sorry you even have to go through this.

I have a question. Someone mentioned using hyrdomorphone. I think that's a man-made morphine/opiate. Does tolerance become an issue at some point and if so, what do you do?

It sounds like people do ok on very low doses for a long time, and that's good. Just wondering what people do if or when the dose is not effective.

Thank you all - and the best to all of you. Joe

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It is baffling to me that I am receiving hydromorphone from my pain pump for over a year with no noticeable pain mitigation. I have had the output adjusted upward more times than I can recall. One would think that I would be in somewhat less pain by now but it seems that my pain has actuallyINCREASED over the past two or three months. Is it possible that greatly increased levels of hydromorphone can actually CAUSE pain instead of relieving it? Would like to hear from others who may have experienced this.
THANK YOU!

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@heisenberg34

It is baffling to me that I am receiving hydromorphone from my pain pump for over a year with no noticeable pain mitigation. I have had the output adjusted upward more times than I can recall. One would think that I would be in somewhat less pain by now but it seems that my pain has actuallyINCREASED over the past two or three months. Is it possible that greatly increased levels of hydromorphone can actually CAUSE pain instead of relieving it? Would like to hear from others who may have experienced this.
THANK YOU!

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I'm no Dr, but it seems very unlikely that the hydromorphone (aka Dilaudid) would cause pain. It seems more likely that you've developed a tolerance to it and that it's not offset with higher doses.

Dialaudid is a powerful drug. This drug is usually used long-term to treat pain associated with cancer.

I do hope you can find some relief. These opiates are so tricky - very effective (usually) at dulling pain but also very addictive - requiring higher and higher doses to achieve the same effect.

All the best to you and I hope you find an answer. Joe

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@bestoflife

I have had mine for over two months now and the relief from the pain is , most of the time, 100%. After surgery, I had spinal headaches for a week or so, but it went away. My life has changed dramatically. I have to remember, this jewel does not cure, it covers up pain. If I get too frisky, I can cause some of my pain to come back and remind me to be grateful for the pain relief and remember I am 80 yo and need to give up on yard work, etc. Best item for chronic pain I have ever experienced.

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What is the name of the pump you are using?

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