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.

@klmpeaches

Thanks for your input. If the trial works I'm going to get the pain pump implanted. Just need relief asap.

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My friend says the pain makes the decision, not us I think that;s true. Good luck.

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@wsh66

You would have to test the meds orally before knowing how they will work. Dilaudid is powerful stuff, much more so than Morphine or Oxycontin. I'm not sure what long term side effects you're talking about. The dose is tiny. I have no problem with constipation. The does would never be enough to get you high so I wouldn't worry about addiction although my Doctor say if my pump failed, I would know it had failed because I would experience withdrawal. I not sure that I would. I gone off meds and had big big decreases in med overnight and never experienced withdrawal. Increased dose level. We turned my pump up several times to get the right dose but are not increasing it anymore. One thing you don't need to be concerned with is the fog that comes with high doses of opioids. Is this the last resort? If you have back issues that a surgeon cannot fix, if you are going to be in pain for the rest of your life, I would say this is the first choice. It was the last resort for me because I had done Thousands of hours of PT, I had taken many different drugs, narcotic and non narcotic and my back was too bad for surgery. I was taking the equivalent of 320 mgs. of oxycontin a day and getting little relief, my life was not really worth living. I was tested for the electrical stimulator and that was ruled out so the pump was the next step. I am not experiencing any side effects that I am aware of. My pump will have to be replaced approximately every 5 years. Who knows by the time I get the one it may be one that lasts forever. More questions? Just ask.

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You have the same story as me except I now have to use a catheter a few times a day and have dementia so they are lowering the dose and added the Metronic’s stimulator (no worth it). I am not sure what the long term choices will be.

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@wsh66

Tell your husband it's your back and your pain.

The pain pump delivers such a small dose of meds there are virtually no side affects. I started at about 3.5 mg of hydromorphone per 24 hours. Five years later that is up to 3.9 mg. This replaced 21q0 mgs. of hydromorphone, 60 mgs. of oxycontin and 20 mgs. of valium. You DO NOT get high. I don't even get constipated. It will not affect your awareness or ability to drive etc. The pain pump is only for people who are not going to get better, who will never be pain free without medical intervention. I had to go through an examination by a number of specialist to be cleared for the pump. You are considered a palliative care patient. Not that your terminal but that you will have the situation your in for the rest of your life. Folks who get all moralistic about the use of pain meds are ill-informed and may have that opinion based on their own history of drug or alcohol use. I put up with a lot of that bull before I found the right doctors.

I would caution you that long term pain and depression go hand in hand and depression can be caused by pain as well as make your experience of pain much more severe. You must be willing to be treated for depression with drugs, talk therapy and bibliotherapy, (reading about depression and understanding the mechanisms). There should be NO value judgements made about depression. It is not a character flaw anymore than high blood pressure or a broken leg is. You don't need people judging you when you need medical care. They can be soul sucking leeches who have no idea how damaging their ideas can be.

You must also be willing to do everything you can to get and stay in good condition both to deal with pain and to deal with depression.

Make sure you get gene testing to determine which drug your body will metabolize best. Then make sure that drug is tested on you via a spinal injection. Don't just accept the first thing suggested because some other patient did well with it that your doctor treated in the past. A company called Gene Sight can furnish the test. Based on our genetic make up, different people metabolize drugs in different ways. The same testing will also predict which anti depressants you will tolerate best and get the most benefit from should you need that. Goggle Gene Sight and give them a call. Mayo also has a similar testing program but Gene Sight was the first and the most experienced.

I wish you good luck and I zsend you Love and Blessings.

W. Stephen Hodder, (wsh66)

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I wish you had your husband support as my wife fights me with trying to manage the pain; they don’t understand long term pain!

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@wsh66

You would have to test the meds orally before knowing how they will work. Dilaudid is powerful stuff, much more so than Morphine or Oxycontin. I'm not sure what long term side effects you're talking about. The dose is tiny. I have no problem with constipation. The does would never be enough to get you high so I wouldn't worry about addiction although my Doctor say if my pump failed, I would know it had failed because I would experience withdrawal. I not sure that I would. I gone off meds and had big big decreases in med overnight and never experienced withdrawal. Increased dose level. We turned my pump up several times to get the right dose but are not increasing it anymore. One thing you don't need to be concerned with is the fog that comes with high doses of opioids. Is this the last resort? If you have back issues that a surgeon cannot fix, if you are going to be in pain for the rest of your life, I would say this is the first choice. It was the last resort for me because I had done Thousands of hours of PT, I had taken many different drugs, narcotic and non narcotic and my back was too bad for surgery. I was taking the equivalent of 320 mgs. of oxycontin a day and getting little relief, my life was not really worth living. I was tested for the electrical stimulator and that was ruled out so the pump was the next step. I am not experiencing any side effects that I am aware of. My pump will have to be replaced approximately every 5 years. Who knows by the time I get the one it may be one that lasts forever. More questions? Just ask.

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I misspoke. You must have the meds tested via spinal injection directly into the spinal fluid. Almost all the meds you swallow are lost to the digestive system. The spinal delivery skips the digestion which is why there are no adverse digestive issues.

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Hi and so glad you are relieved.
I have neuropathy on both my feet hands. Pain level is consistent through the day. Sleeping time has been dramatic as in a painful state 9 (scale 1-10)
Cold tub full shower 20 mins does the pain relieving thus allow to fall a sleep.

Looking for your feedback or advice.

Blessings.

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In 2001 I went over the handlebars of my bicycle. Since then, my pain has gotten worse. I'm now going to a spine and pain center where I only see a doctor once a year and last year doesn't count. With pre-authorization problems and pharmacists looking at me like I'm a druggie looking for my next hit, I found myself last month without a way of getting my pain meds.

The pain was horrendous and if my mom hadn't died several years ago, leaving some pain meds behind, I would have been in a serious bind. Pain levels were skyrocketing and no one was taking it seriously except me. Even our doctors don't often take us seriously! And I'm not kidding in the least when I say on this occasion on a one to ten level, my pain was a sixteen. Had I not been able to find a way to get meds, my goal wouldn't have been to find an alternative doctor, but to find a good undertaker!

Before I retired from federal service in 2006, I worked at NIH, and one day I was shooting the breeze with the head of the Pain and Paliative Care Department at the Clinical Center (who didn't know my situation), I asked him how people in the 1700-1800s dealt with horrible chronic pain, he didn't say a word, nor did he smile. He just looked at me, took his hand and, extending the thumb and small finger of his right hand, tipped it up like he was drinking something. Then he turned the same hand into a pistol, pointed it to the side of his head and released the hammer, which was his extended thumb.

It clearly was something he'd done before, and it wasn't lost on me!

I've only been in pain that serious twice before. Once when I couldn't get my pain meds, as mentioned, and the other when I had serious abdominal cramps and couldn't find relief. Both times I seriously considered suicide.

People often don't take people like me seriously until we're on a slab with with a toe tag. And I've met others like myself. Like the woman who barely survived an incident where her parachute barely opened in time, or the guy who was struck by lightning as he was setting up a live television feed. Or the dad who was doing some electrical work in his bathroom and was knocked into his bathtub and had a near death experience (fortunately he made a full recovery). We're out there and we need to be taken seriously.

Damn seriously!

About fifteen years ago I looked into a pain pump, but the doctors couldn't find the right place on my spine, but now I'm ready to try again. But I'd like to hear your success stories and your stories of failure. As they used to say, the thrill of victory and the agony of defeat!

Thanks!

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@jriler53

In 2001 I went over the handlebars of my bicycle. Since then, my pain has gotten worse. I'm now going to a spine and pain center where I only see a doctor once a year and last year doesn't count. With pre-authorization problems and pharmacists looking at me like I'm a druggie looking for my next hit, I found myself last month without a way of getting my pain meds.

The pain was horrendous and if my mom hadn't died several years ago, leaving some pain meds behind, I would have been in a serious bind. Pain levels were skyrocketing and no one was taking it seriously except me. Even our doctors don't often take us seriously! And I'm not kidding in the least when I say on this occasion on a one to ten level, my pain was a sixteen. Had I not been able to find a way to get meds, my goal wouldn't have been to find an alternative doctor, but to find a good undertaker!

Before I retired from federal service in 2006, I worked at NIH, and one day I was shooting the breeze with the head of the Pain and Paliative Care Department at the Clinical Center (who didn't know my situation), I asked him how people in the 1700-1800s dealt with horrible chronic pain, he didn't say a word, nor did he smile. He just looked at me, took his hand and, extending the thumb and small finger of his right hand, tipped it up like he was drinking something. Then he turned the same hand into a pistol, pointed it to the side of his head and released the hammer, which was his extended thumb.

It clearly was something he'd done before, and it wasn't lost on me!

I've only been in pain that serious twice before. Once when I couldn't get my pain meds, as mentioned, and the other when I had serious abdominal cramps and couldn't find relief. Both times I seriously considered suicide.

People often don't take people like me seriously until we're on a slab with with a toe tag. And I've met others like myself. Like the woman who barely survived an incident where her parachute barely opened in time, or the guy who was struck by lightning as he was setting up a live television feed. Or the dad who was doing some electrical work in his bathroom and was knocked into his bathtub and had a near death experience (fortunately he made a full recovery). We're out there and we need to be taken seriously.

Damn seriously!

About fifteen years ago I looked into a pain pump, but the doctors couldn't find the right place on my spine, but now I'm ready to try again. But I'd like to hear your success stories and your stories of failure. As they used to say, the thrill of victory and the agony of defeat!

Thanks!

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The Metronic’s pump works; however after a few years I was found to have dementia and now they believe the drugs being use caused the dementia. I now have to decide what worse pain (yes this is worse for me) or lost of memory (which is worse for everyone else).

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@jriler53

In 2001 I went over the handlebars of my bicycle. Since then, my pain has gotten worse. I'm now going to a spine and pain center where I only see a doctor once a year and last year doesn't count. With pre-authorization problems and pharmacists looking at me like I'm a druggie looking for my next hit, I found myself last month without a way of getting my pain meds.

The pain was horrendous and if my mom hadn't died several years ago, leaving some pain meds behind, I would have been in a serious bind. Pain levels were skyrocketing and no one was taking it seriously except me. Even our doctors don't often take us seriously! And I'm not kidding in the least when I say on this occasion on a one to ten level, my pain was a sixteen. Had I not been able to find a way to get meds, my goal wouldn't have been to find an alternative doctor, but to find a good undertaker!

Before I retired from federal service in 2006, I worked at NIH, and one day I was shooting the breeze with the head of the Pain and Paliative Care Department at the Clinical Center (who didn't know my situation), I asked him how people in the 1700-1800s dealt with horrible chronic pain, he didn't say a word, nor did he smile. He just looked at me, took his hand and, extending the thumb and small finger of his right hand, tipped it up like he was drinking something. Then he turned the same hand into a pistol, pointed it to the side of his head and released the hammer, which was his extended thumb.

It clearly was something he'd done before, and it wasn't lost on me!

I've only been in pain that serious twice before. Once when I couldn't get my pain meds, as mentioned, and the other when I had serious abdominal cramps and couldn't find relief. Both times I seriously considered suicide.

People often don't take people like me seriously until we're on a slab with with a toe tag. And I've met others like myself. Like the woman who barely survived an incident where her parachute barely opened in time, or the guy who was struck by lightning as he was setting up a live television feed. Or the dad who was doing some electrical work in his bathroom and was knocked into his bathtub and had a near death experience (fortunately he made a full recovery). We're out there and we need to be taken seriously.

Damn seriously!

About fifteen years ago I looked into a pain pump, but the doctors couldn't find the right place on my spine, but now I'm ready to try again. But I'd like to hear your success stories and your stories of failure. As they used to say, the thrill of victory and the agony of defeat!

Thanks!

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Hello @jriler53 and welcome to Mayo Clinic Connect. Because you are interested in connecting with others who have experience with pain pumps as you reconsider one again, I have moved your post into this discussion on the same topic: https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/

I see member @gcranor has replied to you. I would also like to bring in @wsh66 to see if he may be able to share more with you.

Do you have another doctor you are working with as you consider a pain pump again?

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I have the same Pain Doctor for 10 years and always try’s to help manage the pain; I don’t believe science has or will solve pain management

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The stigma of being dependent on drugs is both real and ridiculous. I’m dependent on several drugs to keep me alive and able to cope. The drugs I take to keep me alive are carcinogenic and have serious side effects and a narrow therapeutic index, but since they aren’t classed as narcotics there’s no stigma. But when it comes to pain meds and MH meds, get ready to be looked at askance for being dependent.

I’m not sure what can be done about this, but I know all of us on long term pain and mental health meds have to deal with it ad nauseam.

Hang in there, and make noise. You aren’t alone and together we’re powerful.

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