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.

@texasaviatrix

I had a Medtronics pain pump for 8 years, using a cocktail of morphine and a couple of other drugs to manage chronic lower back pain due to trauma. (2008-2016) My experience was this. It took a while to find the dosage and mixture of drugs to reduce the pain. Once it was found, I had about 75% relief with occasional break through pain that could only be managed by lying down. This was quite the improvement, however the trade off was brain fog and short term memory loss. But when you’ve lived with severe pain for years, even that trade off may be acceptable. The pump had a battery life of 8 years and I was within months of that when it mysteriously stopped working all together. My pain doctor just shrugged his shoulders and rolled his eyes. I suppose he thought I was just trying to get a higher dose. When I finally went to another pain doc, the first thing he said was that he needed to check the integrity of the line that ran from my pump to my spinal cord. He said that model of Medtronics pump was notorious for twisting and splitting. Long story short, it turned out that the line was indeed split and instead of going to the spinal cord, the meds were just spewing into my abdominal cavity (the pump was implanted in my abdomen). He said newer models had fixed the problem and since it was almost time to replace the pump anyway, he said we could go ahead and do that. However, he also gave me the option of trying a spinal cord stimulator instead. I liked the idea of ditching the heavy opioids, so we did the trial. It seemed to work OK, however I did feel a bit pressured by the doctor and gave the go ahead to replace my pump with the stimulator (the battery went into the same space where the pump was). Although he went through the motions of “weaning” me off of the drug, a day after the surgery to remove the pump I went into full blown withdrawal and had to stay an extra couple of days in the hospital. It was horrific and it took 5 months of methadone treatment to completely withdraw. I wouldn’t wish that experience on my worst enemy! The spinal cord stimulator never lived up to its hype. After 6 years of fiddling with the program, the technicians never were able to get it to work for me. It was a huge disappointment and waste of time and money. So, you might ask if I would go back to the pump. At this point in my life, no. I am 63 years old and have lived with severe chronic pain for 20 years now. While it has wrecked my life (my husband left me and I can’t work), the idea of taking heavy a dose of opioids again is daunting. I currently take morphine and hydrocodone orally, but limit it to once daily (usually at night) because twice daily made it less effective. At my age and with no one around to help out, I just can’t justify bathing my brain in powerful narcotics with a pump anymore. That’s not to say that it’s not the answer for others. Just thought I should share my experience.

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If you're not taking opioids anymore, you might ask about taking LDN - Low Dose Naltrexone . It's used for pain in small dosages, but cannot be used if taking opioids at all. A friend of mine with Lupus has used LDN for years to manage her chronic pain.
https://pubmed.ncbi.nlm.nih.gov/32845365/

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@bkhc54

How are you doing? I’m sure you’re probably dealing with pain and recuperating but I hope you are doing well and are more comfortable than you expected. You mentioned that you would be going in every day for the first week while the doctors test your pump with saline. I hope the first medication they give you works perfectly and gives you the pain relief you need. When you get back to the support group please let us know how you are doing.
Thoughts and prayers ~ Barbara

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Hey Barbara and group.
Sorry you thought I was going every day. They put it in last Thursday and I don’t go in until the 18 of July when as I understand so far will begin a process of trial and error to get the right amount for me. Every day may have been too much for me. The trip is about one hour there and an hour home. I would be exhausted. Lol. The healing is going well from having it put in but time will tell.
Melody.

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@ckolakowski

Hello. I am new to this group and trying to find help for my 79 year old mother who has had chronic back pain for 10 yrs. Had spine and neck fusions. Tried all meds. Finally a Medtronics pain pump was implanted in March 2023 and worked for about 3 weeks and since April she is back in pain. Makes no sense to me and pain mgmt doc has slowly increased dosages to now .92 mg per day of Morphine. I am seeing if others have same issue of pain returning after a few good weeks initially? Medtronics rep has no good answers right now. She has since relocated and will see a new pain mgmt doc on June 20. Thanks!

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Have you gotten any answers about why your mother’s pain pump stopped helping her? I’m researching/reading anything reputable I can find on pain pumps because I’m in desperate need of help with the pain I’m living with. So, yesterday I read about a person’s pump suddenly not helping anymore. The doctor did an examination of the tube that delivers the pain medication and because of a problem with the tube it needed to be replaced. It worked fine after that and has continued to do so.

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@ibmaxine

Hey Barbara and group.
Sorry you thought I was going every day. They put it in last Thursday and I don’t go in until the 18 of July when as I understand so far will begin a process of trial and error to get the right amount for me. Every day may have been too much for me. The trip is about one hour there and an hour home. I would be exhausted. Lol. The healing is going well from having it put in but time will tell.
Melody.

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I’m glad your healing is going well and that you only have another 5 days until the drug testing. I checked with my neurologist’s office on Tuesday and the medical assistant says she sent my records and referral that same day. It’s been a month of wasted time since the doctor told her to take care of this. If they accept my case my husband will have to drive me 1 1/2 hours each way. I have a VRBO rental I looked into if I need to stay for a few days.
Please keep in touch. I want to hear about your progress.
Barbara

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@bkhc54

Have you gotten any answers about why your mother’s pain pump stopped helping her? I’m researching/reading anything reputable I can find on pain pumps because I’m in desperate need of help with the pain I’m living with. So, yesterday I read about a person’s pump suddenly not helping anymore. The doctor did an examination of the tube that delivers the pain medication and because of a problem with the tube it needed to be replaced. It worked fine after that and has continued to do so.

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Hi. We just found out this week she has an large accumulation of fluid in her back which may indicate catherter is leaking....a dye test next week to see what is going on. Why it took her drs office almost 3 weeks to tell us this after CT scan is disturbing but that's the new normal for the health care system in some areas.

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I’m glad they’ve finally done a CT scan and found out where the medication has been going all of this time. No wonder she felt like the pump suddenly stopped working and her pain came back! Tell your mom that I’m so sorry that this happened to her. She’s blessed to have you in her life.
After this next test I hope the lab gets the results to your doctor quickly and your mother can get the tubing fixed soon! Does your doctor or clinic have a patient portal where you can sign in and get info such as test results? I can see my results on any kind of test (blood work, xrays, MRI) after they have been seen by the doctor in charge of that department. I can see xray results the same day and even before my doctor! If that’s an option you might want to look into it. Also, I leave a message for my doctor(s) when I think something should be done sooner or the problem needs attention. I’m really nice about it but I pay their salary. My orthopedic surgeon sent his kids to college with my surgeries costs! That’s a joke I tell him but…..
Please keep me posted. I’d like to know how the scan with dye goes and what they discover. I’ll be praying that they have an opening to fix the problem soon 💕Barbara

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@texasaviatrix

I had a Medtronics pain pump for 8 years, using a cocktail of morphine and a couple of other drugs to manage chronic lower back pain due to trauma. (2008-2016) My experience was this. It took a while to find the dosage and mixture of drugs to reduce the pain. Once it was found, I had about 75% relief with occasional break through pain that could only be managed by lying down. This was quite the improvement, however the trade off was brain fog and short term memory loss. But when you’ve lived with severe pain for years, even that trade off may be acceptable. The pump had a battery life of 8 years and I was within months of that when it mysteriously stopped working all together. My pain doctor just shrugged his shoulders and rolled his eyes. I suppose he thought I was just trying to get a higher dose. When I finally went to another pain doc, the first thing he said was that he needed to check the integrity of the line that ran from my pump to my spinal cord. He said that model of Medtronics pump was notorious for twisting and splitting. Long story short, it turned out that the line was indeed split and instead of going to the spinal cord, the meds were just spewing into my abdominal cavity (the pump was implanted in my abdomen). He said newer models had fixed the problem and since it was almost time to replace the pump anyway, he said we could go ahead and do that. However, he also gave me the option of trying a spinal cord stimulator instead. I liked the idea of ditching the heavy opioids, so we did the trial. It seemed to work OK, however I did feel a bit pressured by the doctor and gave the go ahead to replace my pump with the stimulator (the battery went into the same space where the pump was). Although he went through the motions of “weaning” me off of the drug, a day after the surgery to remove the pump I went into full blown withdrawal and had to stay an extra couple of days in the hospital. It was horrific and it took 5 months of methadone treatment to completely withdraw. I wouldn’t wish that experience on my worst enemy! The spinal cord stimulator never lived up to its hype. After 6 years of fiddling with the program, the technicians never were able to get it to work for me. It was a huge disappointment and waste of time and money. So, you might ask if I would go back to the pump. At this point in my life, no. I am 63 years old and have lived with severe chronic pain for 20 years now. While it has wrecked my life (my husband left me and I can’t work), the idea of taking heavy a dose of opioids again is daunting. I currently take morphine and hydrocodone orally, but limit it to once daily (usually at night) because twice daily made it less effective. At my age and with no one around to help out, I just can’t justify bathing my brain in powerful narcotics with a pump anymore. That’s not to say that it’s not the answer for others. Just thought I should share my experience.

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What a testimony! I’m so sorry you’ve had to go through all of that , I was searching this page to see if anyone has it had/ has a pain pump I didn’t know for sure what meds they put in the pump I would think the morphine would make you groggy all the time if I had one I’d probably sleep all the time so I had been thinking about one if those for me but after reading your post I think I will change ny mind about one of those. I have chronic back pain I need rods and have severe stenosis but I only take Tramadol Tylenol and gabapentin I can manage with those but I can’t do much or it will get to painful , certainly can’t go shopping for clothes stuff like that, it is a hassle to order things and have to send them back because they don’t fit right . I do wish for you to get relief for your back and many blessings

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I have the Medtronics pain pump and have it for seven (7) years; I would not be able to manage my pain as well without the pump. It gives me some control of my day and freedom I need to live with the remainder of my pain. I have the best pain doctor who listens and works hard to give me tools to keep my sanity. Dr. Kuharich in Silverdale, WA is 10 stars! Your pain doctor looks at your whole body and gives you options to have the best quality of life with living with the injuries you may have!

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@kpickowitz

If you're not taking opioids anymore, you might ask about taking LDN - Low Dose Naltrexone . It's used for pain in small dosages, but cannot be used if taking opioids at all. A friend of mine with Lupus has used LDN for years to manage her chronic pain.
https://pubmed.ncbi.nlm.nih.gov/32845365/

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I have been taking LDN 4.5mg for a year with no relief

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@gcranor

I have the Medtronics pain pump and have it for seven (7) years; I would not be able to manage my pain as well without the pump. It gives me some control of my day and freedom I need to live with the remainder of my pain. I have the best pain doctor who listens and works hard to give me tools to keep my sanity. Dr. Kuharich in Silverdale, WA is 10 stars! Your pain doctor looks at your whole body and gives you options to have the best quality of life with living with the injuries you may have!

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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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