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

Posted by Stephen @wsh66, Nov 9, 2018

I have had an implanted pain pump in my abdomen for about 18 months. It is a miracle. I get a total of 4.764 mgs. of Dilaudid, If I administer all of the 10 extra micro does I can have in 24 hours. If I don't use those extra doses I get 2.74 mgs. over 24 hours. The effect is 300 times more effective than if I took the same dose orally. I go to my doctors office every 3 months to have the pump refilled. I'm there for about 15 minutes. The actual process of refilling the pump takes no more than 5 minutes and is painless. No prescriptions to worry about, no one wondering if I'm misusing or selling my pain meds, no one making me feel like a drug addict or a criminal. In our current climate this is even more important than it was two years ago. Many Doctors want nothing to do with pain patients or writing scripts for pain meds. I know many of you have been there. This method is especially good for back issues as the drug is delivered via a catheter which runs up my spin. Yes, I still have pain but it's pain I can live with. If your Doctor doesn't know about this or doesn't want to do it contact a pain clinic. The Doctor who put mine in is a Neurosurgeon. If you have any questions please respond.

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

That is a exactly what I read explaining, but because of the presence of fentanyl, the black market is too dangerous. It will kill you. Please read it again. It is an important cautionary tale.

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@gailmollin

...hello, I suffer from chronic back and leg pain from sciatica and deg. discs and did not want to go the opiad route but what you sàid is interesting but has many questions.
How do you know if medication will help before putting in the pump and
You still face long term side effects from the meds and
How does the problem of needing to increase doses overtime than
Faced with an addiction ...
Would you say this method is a last resort when all else fails?

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These are good questions! For me, I think it is a last resort.

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@txamo

These are good questions! For me, I think it is a last resort.

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The last resort or the ultimate solution? Are you going to be in pain for the rest of your life, serious pain affecting your quality of life and desire to live? Don't forget, because of my situation, I had access to unlimited supplies of opioids, within reason, 262 mgs per day, and even those doses became ineffective. Even so they were dulling my brain and senses. I was not experiencing euphoria or highs of any kind. They just stopped working well enough and left me with a syndrome of hypersensitivity that made any small pain just unbearable. The pump brings me sufficient relief to carry on and be mentally sharp. I am still disabled by pain because walking causes great pain and weariness. I have less then one working lung and the effort to breath wears me out. The pump is safe, cheap, doesn't make problems for my doctors on whom I depend. Many of you may note that this reflects big change from my previous position advocating for easy access to all dugs and that still works for a time. The added stress that obtaining those meds really complicates your life and adds to stress and depression which both increase the experience of having pain. If your pain comes and goes or if your recovering from something that will get better then oral meds are appropriate and should be available but they are not always easy to get these days. I had some are doctors who trusted me and understood that giving me control over what I took resulted in me needing and taking less. But we must never forget, humans love to get high. It starts when your about 3 years old and you realize you can alter your consciousness by spinning in circles until you get dizzy and fall down. What do we do next? We stand up and do it again. Say you have pain meds for what ever reason and you have a day or a function that you really want to be present for. You want no pain for one day or evening. So you take an extra pill or two and your brain experiences euphoria. Maybe it works so well the next time a situation .like that comes along you take 3 extra pills and you get wacked and your brain really likes it. At this point your brain becomes a free agent. It's still ,living in your head but it has it's own desires and agenda now. If you haven't lived with or around addicts you have no idea how little control many people have from this point on. I have seen junkies and other addicts do unbelievable things not just to get high but just to stave off withdrawal. I was sometimes denied pain meds when I hurt so much I wanted to die but I never hurt badly enough to go to the street to buy. The drive to be out of pain is not that strong, not nearly as strong as the brains desire to repeat the experience of euphoria. Having witnessed this behavior in junkies back in the 70's, I was able to resist ever taking enough meds to completely eliminate my pain. I knew how easy it would be to slip over that line into euphoria and how hard it is to not repeat that behavior. I guess I was lucky said the guy whose quality of life has been greatly diminished for 30 years, whose successful career as a glass artist was brought to an end and his ability to walk takin away by pain. Anything is better than addiction. If you doubt how bad it can be or that it can happen to you just stop and look at how many people have died, not from pain but from overdoses buying street pills or stolen pills they took after months of abstinence not realizing how much their tolerance had gone down.

Again, ic your in pain and are going to stay that way, maybe try the spinal stimulator. Personally I don't think they are worth a damn but they work for some people. Beyond that, the i trathecal pump is the answer.

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@wsh66

The last resort or the ultimate solution? Are you going to be in pain for the rest of your life, serious pain affecting your quality of life and desire to live? Don't forget, because of my situation, I had access to unlimited supplies of opioids, within reason, 262 mgs per day, and even those doses became ineffective. Even so they were dulling my brain and senses. I was not experiencing euphoria or highs of any kind. They just stopped working well enough and left me with a syndrome of hypersensitivity that made any small pain just unbearable. The pump brings me sufficient relief to carry on and be mentally sharp. I am still disabled by pain because walking causes great pain and weariness. I have less then one working lung and the effort to breath wears me out. The pump is safe, cheap, doesn't make problems for my doctors on whom I depend. Many of you may note that this reflects big change from my previous position advocating for easy access to all dugs and that still works for a time. The added stress that obtaining those meds really complicates your life and adds to stress and depression which both increase the experience of having pain. If your pain comes and goes or if your recovering from something that will get better then oral meds are appropriate and should be available but they are not always easy to get these days. I had some are doctors who trusted me and understood that giving me control over what I took resulted in me needing and taking less. But we must never forget, humans love to get high. It starts when your about 3 years old and you realize you can alter your consciousness by spinning in circles until you get dizzy and fall down. What do we do next? We stand up and do it again. Say you have pain meds for what ever reason and you have a day or a function that you really want to be present for. You want no pain for one day or evening. So you take an extra pill or two and your brain experiences euphoria. Maybe it works so well the next time a situation .like that comes along you take 3 extra pills and you get wacked and your brain really likes it. At this point your brain becomes a free agent. It's still ,living in your head but it has it's own desires and agenda now. If you haven't lived with or around addicts you have no idea how little control many people have from this point on. I have seen junkies and other addicts do unbelievable things not just to get high but just to stave off withdrawal. I was sometimes denied pain meds when I hurt so much I wanted to die but I never hurt badly enough to go to the street to buy. The drive to be out of pain is not that strong, not nearly as strong as the brains desire to repeat the experience of euphoria. Having witnessed this behavior in junkies back in the 70's, I was able to resist ever taking enough meds to completely eliminate my pain. I knew how easy it would be to slip over that line into euphoria and how hard it is to not repeat that behavior. I guess I was lucky said the guy whose quality of life has been greatly diminished for 30 years, whose successful career as a glass artist was brought to an end and his ability to walk takin away by pain. Anything is better than addiction. If you doubt how bad it can be or that it can happen to you just stop and look at how many people have died, not from pain but from overdoses buying street pills or stolen pills they took after months of abstinence not realizing how much their tolerance had gone down.

Again, ic your in pain and are going to stay that way, maybe try the spinal stimulator. Personally I don't think they are worth a damn but they work for some people. Beyond that, the i trathecal pump is the answer.

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@stephen
You make a compelling argument, between your initial post and this last one. I do not live with chronic pain (my wife does) but if I did, based on what I have just read (the 2 posts together) I would seriously consider a pump. Summarizing (and quoting verbatim) your points that impressed me the most:

-300 times more effective than if I took the same dose orally
-I go to my doctors office every 3 months; process of refilling the pump takes no more than 5 minutes and is painless
-pump brings me sufficient relief to carry on and be mentally sharp
-safe, cheap, doesn't make problems for my doctors on whom I depend
-Anything is better than addiction

You make that last point so poignantly and effectively. I am happy for you that you are intelligent enough and disciplined enough to have figured this all out and leaned how to make your life, if not fulfilled, at least workably tolerable.

My wife has a pain regime which as of today does not include any prescription medications. And she is managing to cope. So far. If she ever got to a point where there were no way for her to manage any longer living and dealing with her pain as she is doing, I believe this would be an option she would clearly want to consider.

Best to you, Hank

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Every patient is very different, but my husband did not get any benefit from his pain pump, implanted for cancer pain, at Mayo Rochester. The medicine in it was morphine. So I don't know if the choice of medicine was a poor fit for him, but he did not get pain relief in spite of several attempts to adjust the medications. He would complain of feeling "out of it" so mental sharpness was degraded. He was on other medications as well and as caregiver I found it nearly impossible to be an effective advocate and share with doctors what I though was bothering him from a medication perspective. Combining medications is a huge challenge, because it is impossible to know what meds are helping and which ones are hurting. The surgery was supposed to be a simple outpatient procedure, but he stayed in the hospital for 4 days, unable to wake up and stay up, nearly unable to walk, not eating or drinking well, unable to use the bathroom. Again, I don't know if the surgery and its effects were the culprit or the morphine and perhaps a unexpected reaction to it. Needless to say, my views of an implantable pump are negative and clouded by my husband's very poor experience with his. The theory behind the pump is awesome, but in reality for us, none of that materialized. I do hope others are faring better, but a pump is not for everyone.

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@lisakuehl

Every patient is very different, but my husband did not get any benefit from his pain pump, implanted for cancer pain, at Mayo Rochester. The medicine in it was morphine. So I don't know if the choice of medicine was a poor fit for him, but he did not get pain relief in spite of several attempts to adjust the medications. He would complain of feeling "out of it" so mental sharpness was degraded. He was on other medications as well and as caregiver I found it nearly impossible to be an effective advocate and share with doctors what I though was bothering him from a medication perspective. Combining medications is a huge challenge, because it is impossible to know what meds are helping and which ones are hurting. The surgery was supposed to be a simple outpatient procedure, but he stayed in the hospital for 4 days, unable to wake up and stay up, nearly unable to walk, not eating or drinking well, unable to use the bathroom. Again, I don't know if the surgery and its effects were the culprit or the morphine and perhaps a unexpected reaction to it. Needless to say, my views of an implantable pump are negative and clouded by my husband's very poor experience with his. The theory behind the pump is awesome, but in reality for us, none of that materialized. I do hope others are faring better, but a pump is not for everyone.

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@lisakuehl Thank you from a caregiver's perspective. You are absolutely correct, not everyone can tolerate or find relief in the same way others might. Our bodies are the same, but at the same time so individualized and unique. I believe that is why Mayo Connect is so important, as we share our journeys and tell "real life" stories.

My chronic pain story is different from anyone else. And my method for handling it works for me, today, but may change in the future as it has changed from the past. Each day it might be tweaked based on that day.

What did your husband do for pain relief, ultimately? Thank you in advance for your thoughts.
Ginger

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@lisakuehl

Every patient is very different, but my husband did not get any benefit from his pain pump, implanted for cancer pain, at Mayo Rochester. The medicine in it was morphine. So I don't know if the choice of medicine was a poor fit for him, but he did not get pain relief in spite of several attempts to adjust the medications. He would complain of feeling "out of it" so mental sharpness was degraded. He was on other medications as well and as caregiver I found it nearly impossible to be an effective advocate and share with doctors what I though was bothering him from a medication perspective. Combining medications is a huge challenge, because it is impossible to know what meds are helping and which ones are hurting. The surgery was supposed to be a simple outpatient procedure, but he stayed in the hospital for 4 days, unable to wake up and stay up, nearly unable to walk, not eating or drinking well, unable to use the bathroom. Again, I don't know if the surgery and its effects were the culprit or the morphine and perhaps a unexpected reaction to it. Needless to say, my views of an implantable pump are negative and clouded by my husband's very poor experience with his. The theory behind the pump is awesome, but in reality for us, none of that materialized. I do hope others are faring better, but a pump is not for everyone.

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That's not good. Did have testing done to determine what med would be best for him? Morphine is useless to me. We knew that before I had my pump. Mine has Dilaudud in it.

I can't imagine getting a pump as an outpatient procedure. It's fairly tricky surgery. A large incision and then having a catheter threaded up the inside of your spine.

When I had cancer, which is why I have a pump (the lasting effects of neuropathy combined with the need for extreme compression on one leg), I opted for the U of M instead of Mayo. They, (Mayp), have come very late to the game of gene testing to determine what meds one should take. Arrogance I assume. There has been a good bit of that in regards to using an analysis of ones genes to replace the Doctors opinion about what drug you should use.

Dilaudud is much stronger than morphine and at least for me, far fewer side effects. It sounds like your husband was getting too much, the groggy and trouble walking etc. yet was getting no pain relief. The worst of both possibilities. I would blame the choice of morphine, a very old solution. Gene analyses might have revealed the poor fit for your husband. I'm very sorry he had the experience that he had.

I only get 4mgs of Dilaudid every 24 hours which I assume is why I have no side effects. At the same time that gives me the effect of 400 to 1200 mgs if taken orally.

Obviously no one solution fits everyone. Your husbands experience is only the second one I've heard of where the pump wasn't effective. I met a man at the pain clinic who wanted his removed when he learned that he wouldn't be continuing his oral meds which he preferred. Not that I'm in a position to be aware of the larger picture.

I'm very lucky to have the Doctor I have who is the one who did the implant. He is a brilliant researcher in the field of deep brain stimulation and I was very lucky to land on his operating table.

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What if you have pain in more than one location? I have low back and neck problems

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The pump deposits the meds into the spinal fluid. It blocks pain everywhere, no matter how many locations hurt.

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