1. < Chronic Pain

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.

heisenberg34 | @heisenberg34 | May 30, 2023

Does anyone know of a way to keep my implanted morphine pain pump from "jiggling around" like a tub of jello. I don't want it too flop around too much. I was thinking of getting a 4" Ace bandage and wrapping it around my belly to help keep the pump in place. Sound crazy?
Appreciate your suggestions.

REPLY
moldybrain | @moldybrain | Aug 3, 2023
In reply to @ess77 "@Colleenyoung, @jcd, and all...Yes, my 54-year-old son has a pain pump delivering Dilaudid from the puck-sized..." + (show)
@ess77

@colleenyoung, @jcd, and all...Yes, my 54-year-old son has a pain pump delivering Dilaudid from the puck-sized disc implanted in his back, kidney area/waist. This seems to be the drug of choice for his pain from dystonia, and back/cervical nerve pain 24/7 for the last 20 years.

He's lost his entire life, and lives a difficult life with constant pain, spiking at times when he uses his left arm, or hand or raises his head to look straight or upward. Those times the pain causes an electric current to run through his body. It's horrible but the pump has made an enormous difference. An enormous improvement.

The catheter runs from the disc at his waist along his spinal cord to his cervical neck area, helping his entire body re pain. Nothing is controlled. The normal pain from the Dystonia causes all his body muscles to contract constantly, putting his body in a fight/flight state all the time, but it helped, creating full body pain/discomfort. He takes additional meds orally -Tinzanidine for muscle relaxant that helps take the edge off. This doc doesn't want to add to the Dilaudid. It's so strong, any add-ons are oral. He also takes drugs for anxiety, BP, etc.

He's had several nerve ablations that did not do much. He had one several months ago that did, however, relieve some of the neck/shoulder/arm pain that's only slightly helped with the pump. They are supposed to be given every 6 months if needed. His last only a couple of months, then the electric pain returns as before. Botox injections by a doctor who really understands the particular needs of your son may be helpful, depending on the causes of his pain.

My son was considered at Mayo for Deep Brain Stimulation Surgery but denied as they didn't think it would address the pain issues that are his main struggle. He has tremors, and jerks at times, which the surgery might address, but the pain is his life killer and can't be helped with this surgery.

So, all to say if you have severe pain that can't be controlled normally and you have a reputable pain doctor overseeing your health, the pain pump can be very helpful. It has given my son the chance to at least go out of the house, drive and get his own groceries, and be slightly active. Before the pump, he could do none of these things. I helped with it all, but now he has more freedom and mobility thanks to the pump.

He also had side effects from Dilaudid. It's such a strong medication his intestines are a challenge, it affects the positioning in a chair or bed. Having it in the back is great as it's out of his way for most movements and if he has a belly or whatever it is better positioned. He has the 'bumper' thingy he can use to give an extra dose of the med, but it is limited and controlled so he won't have the kind of extreme constant body pain as before. For many years prior to the correct diagnosis here at Mayo, he used Fentalyn patches daily, up to 75-100, and took the normal strong pain meds for many years. Now, only the pump for the pain, Tinzanidine for muscle relaxation-at highest allowed dosage, and other meds to help whatever.

So, be sure you have the best available doctors, ask bunches of questions, and learn everything you can about your issues and your body. You as a patient much have control over your health, and your care, your decisions are yours. The pump decision was a keeper for my son. It doesn't solve your problems. It may create different issues. But, it can certainly be an important answer for helping improve your life.

May you and your son walk this journey together in peace, with the best care available.
Be blessed. Elizabeth

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I can’t do anything. I’m 60 and live with this pain 24/7. I’ve had this for more than 10 years. I’ve been getting Botox the last year. It only helps a little and only for 8 weeks. I’m at the end of my rope almost. Where can I go to see your sons doctor?

REPLY
misssusie0625 | @misssusie0625 | Aug 3, 2023

I am on suboxone for pain that Def helps but of course I'm now labeled as a drug addict. Something I've fought against since my 30s when I began this horrible pain journey.
I live in maine and not even a bit hopeful for a pump. I'm 55 yrs old.

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heisenberg34 | @heisenberg34 | Aug 17, 2023
In reply to @wsh66 "You would have to test the meds orally before knowing how they will work. Dilaudid is..." + (show)
@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 have had my medtronics pump since April. After 4 or 5 adjustments of dosage (hydromorphone), I had excellent pain relief for about a week. Then, the pain in my buttocks, lower back, and burning in feet returned. I have had dye test that showed that the pump is working properly. I have had 3 or 4 more adjustments and may be getting slight relief, but nothing like that one week, or the trial.
Have you had your pump readjusted? My pain Doc says I am at a high level of dosage, so, how can I know how much is too much? I was really hoping, like you, that after several years of drugs, spinal fusion, spinal cord stimulator, PT, etc, the pump would help give me a good portion of my life back. Anything relevant from your experiences would be appeciated. Glad that someone has had success with the pump.

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jetsetter081268 | @jetsetter081268 | Aug 18, 2023

Have tried anything natural to help with your pain?
I am trying to get away from pharma meds where my liver and body are just getting hammered every day...

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mutter3 | @mutter3 | Aug 18, 2023

I got my pain pump April 11,2023. It was a three year battle with the insurance. They agreed to pay for the pump after the first year but not the Dilaudid. I had done trials with morphine and Prialt(sea snail venom) and had urinary retention with both. The only two pain meds FDA approved for the pump are those two. Actually BCBS is suing some pain management clinics for return of payment because they used dilaudid which is off label. Sorry for meandering. The pump is a slow process . Right now I go every month to have the dose increased. It is very individualized and takes time to find the right dose. We are getting ready to increase that to every two weeks. I am currently at 0.0110 continuous infusion over 24 hours. I have to laugh when I compare that to the oral equivalent. So far my pain has dropped from a 9 to between 6-7. I look forward to continuing this journey and have nothing negative to say. I have had no side affects and am thrilled with the gradual improvement.

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debmoby | @debmoby | Aug 21, 2023

Good Morning - I've been reading your comments on your pain pump. A new PM has suggested I get one as well. I noted in one of your comments that you stated it did not help your Neuropathy. I have a SCS, which does help to somewhat reduce my actual back pain, but the SCS and the highest levels of meds allowed today, do not touch my very severe burning in my feet & legs spreading into my thighs. (Left/Right at different levels and intensity.) I wonder if you have the same type of Neuropathy that I have? Or if it is not caused by your damaged spine, maybe in your arms or other spots? Mine is from damaged nerve roots in lumbar spine. Why doesn't your pain pump reduce that pain also? Can you explain more on this topic please? Thanks!

REPLY
1 reply
heisenberg34 | @heisenberg34 | Aug 22, 2023
In reply to @debmoby "Good Morning - I've been reading your comments on your pain pump. A new PM has..." + (show)
@debmoby

Good Morning - I've been reading your comments on your pain pump. A new PM has suggested I get one as well. I noted in one of your comments that you stated it did not help your Neuropathy. I have a SCS, which does help to somewhat reduce my actual back pain, but the SCS and the highest levels of meds allowed today, do not touch my very severe burning in my feet & legs spreading into my thighs. (Left/Right at different levels and intensity.) I wonder if you have the same type of Neuropathy that I have? Or if it is not caused by your damaged spine, maybe in your arms or other spots? Mine is from damaged nerve roots in lumbar spine. Why doesn't your pain pump reduce that pain also? Can you explain more on this topic please? Thanks!

Jump to this post

I have very similar symptoms. No doctor can pinpoint the exact source of my pain. The pump gave me decent relief for about a week. Then it kind of stopped. They are perplexed. I am at a relatively high dosage, but what is too high? We just moved to Delaware so I have to find new docs.

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2 replies
jthomas458 | @jthomas458 | Aug 23, 2023
In reply to @heisenberg34 "I have very similar symptoms. No doctor can pinpoint the exact source of my pain. The..." + (show)
@heisenberg34

I have very similar symptoms. No doctor can pinpoint the exact source of my pain. The pump gave me decent relief for about a week. Then it kind of stopped. They are perplexed. I am at a relatively high dosage, but what is too high? We just moved to Delaware so I have to find new docs.

Jump to this post

I wish you luck finding a doctor to help you with your pain pump. I have considered getting a pain pump in the past but I’ve heard that some doctors don’t like to service pain pumps that have been implanted by other doctors. I don’t know if it’s true, but I can only imagine that might be the case. But I hope you will find someone and figure it out. If it gave you relief for a week, it seems like a willing and capable pain management doctor could find the problem and fix it.

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pecanpie | @pecanpie | Aug 23, 2023

Who should I contact (eg. Neurology Department) at the University of Rochester Medical Center located in Rochester, New York for a pain pump consideration?

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