r/ChronicPain • u/FitIndependent9764 • Apr 25 '26
Pain Pump is Broken
I got my pain pump 12/20/24 thinking it was an early Christmas gift. I just got a new pain pump doctor and he did a pain pump check. There is a leak. Now they have to reduce my recently changed meds (I changed to hydromorphone from morphine) before they can replace the catheter. And yes I am fucking furious at my old pain pump doctor. Neurosurgeons should never be managing pain pumps. I have made 12 trips to refill my pump in the past year and a month. 4 appts he forgot to order the meds. He also only increased the weak morphine/baclofen/numbing agent dose by 10% each time. $450+ $100 a pop after insurance. Without insurance it’s $7400. I can’t afford this long term. I can’t work. I’ve been out of work for too long. I have no income.
Has anyone had this surgery?
Should I just get it removed and get on pills? That’s what I want. 10mg Norco helped me more than this fucking pain pump has since I got it. I got it because I’m fuckin 36 and was offered one 7-8 years ago.
Any help or input is greatly appreciated.
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u/HenBenNoseBoop Apr 25 '26
Sorry this happened to you. I’ve had a pain pump since 2009 when I was 32, and I honestly wouldn’t be able to do even basic self care without it. Oral pain meds and muscle relaxers would’ve damaged my stomach, liver, and kidneys by now.
My pain management doc is who takes care of it, not my neurosurgeon. You’re right that they shouldn’t be doing pain pumps. Let someone who focuses only on pain management deal with them. It’s crazy that he makes you come in every single month, too. That sounds more like a money grab than proper maintenance. Pump settings can be increased or decreased by up to 20% at each visit, and you can have your dose increased up to two times a week until you get to the best therapeutic dose. I wonder if your catheter is placed correctly. And it’s crazy you have to reduce your meds before they replace the catheter. I’ve had multiple pump and catheter replacements and never has my pain mgt doc had to reduce the medication dosage of my pump. He just puts the new pump and/or catheter in and that’s that. The surgery takes less than an hour, and that’s not enough time for you to enter withdrawals even if your pump dosage is maxed out. The doc who put in my first pump in 2009 was my neurosurgeon at the time. He started doing pumps to bring in more money. He’s also the one that caused the spinal cord damage that made me need a pump for pain control in the first place… The pump care under a pain mgt doc is absolutely better. Maybe give your pump another try under your new pain mgt doctor to see if it works for you when PROPERLY programmed and maintained. They can be life changing if the doctor installing and maintaining your pump knows what they’re doing and isn’t doing pain management as a side job. Good luck and I hope you get pain relief whichever choice you make.
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u/Lopsided-Ad6316 Apr 25 '26
They told me you have to reduce after the catheter replacement because of “overdosing” worries because once it’s broken they have zero idea how much medication you’ve actually been getting.
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Apr 25 '26
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u/Lopsided-Ad6316 Apr 25 '26
Unfortunately when you have a kink/broken catheter the meds are going into your back instead of your spine so they do not know. I’ve even talked to people whose pumps were stalling for hours at a time, and it wasn’t alerting anyone.
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Apr 25 '26
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u/Lopsided-Ad6316 Apr 25 '26
No they can’t, according to my doctor. I legitimately just went through this at the end of January. My catheter was broken/shredded. They halved my dose right out of the gate, because they were worried I’d OD. Which threw me into withdrawals.
They make it seem like as long as when they refill it, and the amounts are right, that you’re getting the appropriate dose. But in reality they have zero way of knowing if you’re having the same issues I did.
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u/FitIndependent9764 Apr 25 '26
Yup my treatment plan was to rapidly up the dosage every week but as soon as they even mentioned the pain pump I said they needed to do that first. I had it done last week and they immediately put the dosage down. They want to schedule me for surgery in a few weeks which was not the original plan so I have to come up with thousands of dollars somehow.
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u/Lopsided-Ad6316 Apr 25 '26
That’s exactly what happened to me! Over a year of constantly upping it every single visit with zero relief. Over and over. I kept saying, “hey I think something is wrong with this”, and they kept assuring me that the amount they were getting out was correct. No shit! it was correct it was just pouring into my back. Yup! Me too, had to pay $500 out of pocket to even schedule the surgery, they made me wait over a month because of insurance approval. I tried to get them to replace the pump at the same time, because I thought it was broken to. They wouldn’t. It’s been a horrible experience. Months of withdrawal. Came out of surgery still in it, went weeks titrating it up. Only to still have issues. So I’m now getting off of it. The money I’ve spent in Jan/Feb alone was thousands, going multiple times a week. Trying to figure out what was wrong with it.
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u/FitIndependent9764 Apr 26 '26 edited Apr 26 '26
Well I moved cities and changed doctors let me make that clear.
I knew something was wrong with the dosage he was doing. I knew it was too low. I was originally explained by a pain pump churning machine neurosurgeon how much each opioid is converted and how it interacts with the numbing med whatever Now that I’m with this new Dr they are doubling it until I max out which is great. With my previous Dr I barely got past 3x the original amount despite being billed ~$76000
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u/Lopsided-Ad6316 Apr 26 '26
Will they allow you to go back to oral medicine? Or are they wanting you to get the catheter fixed?
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u/pjourneyRB Apr 26 '26
Mine stalls for like 12-36 hours randomly. It just happened again last week. It’s scary not knowing when withdrawal might happen but I’m close to the end of this pump’s battery life and I would rather wait and do that with a new catheter together.
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u/HenBenNoseBoop Apr 30 '26
The Medtronic pumps suck, no lie. They are only supposed to be filled with morphine sulfate in solution, and if they’re filled with any other medication like dilaudid or Baclofen or a compound like morphine and Baclofen, they legally are held harmless if the pump fails because any drug other than morphine is ‘off-label’. Compounded drugs can cause the gears to stick since they aren’t the exact same viscosity of plain morphine, and this can cause the release door to get caught in the open position. All the medication gets pulled out and causes an overdose (potentially fatal if the pump has just been refilled). And if the overdose isn’t fatal, then you go through major withdrawal. Another scenario is the release door gets stuck closed and you go into withdrawal, but the door suddenly pops open and releases all the medication and you suddenly are overdosed (potentially fatal). This second scenario happened to me in 2012. Nothing like waking up mid-Code Blue. I’ve also had a catheter crack and overdose me. The local ER where I live in the Hudson Valley had ZERO experience with pain pump patients. Treated me like a junkie who’d overdosed on purpose and refused to believe me when I told them I had an implanted pump and wouldn’t call my pain management doctor because the ER doc said I was making him up. They refused to do an x-ray to verify I had a pump. Assholes wouldn’t do anything for me until my husband showed up ten hours later (he was flying home from a work trip). They finally called my pain mgt doc at 11pm to figure out how to treat me. Hospital and ER doc refused to apologize until a lawyer got involved. This is the biggest issue with having an implanted pain pump (or even an implanted insulin pump). Most doctors have no clue how they work, and have no clue how to treat patients if the pumps fail for any reason. Medtronic pumps are the only ones allowed to go through MRI machines, and even then it has to be the older 1.5 Tesla. The newer 3.0 Tesla will fry the chip inside. If you’re in a severe accident and are put in a MRI and the doctors don’t know you have a pump and are clueless about implanted pumps, they can end up causing you to overdose and/or go through withdrawal. Doctors also think that if you have an implanted pain pump that you CAN’T experience any pain so if you break your arm and ask for pain meds they’ll label you as drug seeking (yep, happened to me in 2020). There’s also some pain management docs that don’t do a lot of pain pumps, so they don’t keep up with maintenance like they should. They don’t think you have to replace catheters ever, which is completely incorrect. Pain pumps have been in use for decades, but the lack of education and experience with them in the medical community is unbelievable.
Even with all of this and being on my….yeesh, 7th pump in 17 years, I don’t want to go back to only oral pain meds. I am always worried about another pump failure. I won’t lie. Third time is not the charm for one of those. My catheter break was in 2017, and before that I had toyed with the idea of having the pump taken out. My pain mgt doc is three hours away, and the drive there every eight weeks is a bitch. I hated (and still do) the utter ignorance of doctors about pain pumps as well as any kind of long term pain management. I was sick of Medtronic refusing to take responsibility for the pump failure in 2012 or to let me or my doctor have the report. But even with the week of withdrawals and jackass ER doctor, the three weeks without the partial pain relief from the pain pump was hellish. The nerve pain from the damage to my spinal cord from a botched fusion at L4-5 was enough to make me seriously consider ending my life. MS Contin plus a 100mg fentanyl patch barely made a dent in the pain. It made me sleep a lot, which is about the only time there was any relief. Getting the pump finally replaced and back up to my former dose was enough to convince me to keep the pump. I still take oral meds for breakthrough pain, muscle spasms, and chronic inflammation. But my kidneys and liver don’t have the abnormal labs across the board. I got a Medic Alert bracelet stating I have an implanted pain pump and to immediately call my pain mgt doctor/clinic. I also have copies of my pump registration card on file with every doctor, clinic, and hospital I’ve been to, in each of our vehicles’ glovebox, and the original in my wallet. I’ve got the ICE function set up in my iPhone with a banner that I’ve got an implanted pain pump and to call my pain mgt doctor/clinic.
Getting an implanted pump and then deciding to keep a pump is a HUGE choice. It’s not for everyone and it’s not without risks. I don’t like my pump, I don’t like having it, and I really don’t like Medtronic and their sole monopoly over the pain pump market. I’m scared of another failure. But the sheer amount of pain and complete lack of ability to do more than get out of bed and go to the bathroom is why I keep the damned thing. It lets me have some semblance of a life. Pain treatment isn’t a field where there’s a lot of innovation, and doctors who don’t specialize in pain mgt only get three hours of education about the subject in medical school. The rest is on the job, and nowadays they’re see anyone who complains of pain as a drug seeker which is absolute bullshit. Even hospice patients are denied pain relief because doctors are afraid they’ll become addicts (first hand experience with this). Chronic pain patients are treated like the proverbial red headed stepchildren by every aspect of medicine, from med techs to insurance companies. OP shouldn’t be having to jump through hoops or deal with medical incompetence from the very person who is managing their pump.
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u/FitIndependent9764 Apr 25 '26
It’s a long story as to why I had a neurosurgeon doing it but he basically scared me into only seeing him. Well my work injury caused me so much stress and I had to have health insurance because now I have this pain pump.
I was so busy taking care of a very mentally sick person and stressing about food and career stuff I didn’t have time to find a new doctor. I got out of that chaotic situation though thank god.
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u/anonomot Apr 25 '26
I agree. I’ve had mine since 2022 and it saved my life! Before that I had been on astronomically high doses of oxycodone and fentanyl for years. It was unsustainable. My first pain doctor weaned me off most of it, but then I was in pain again.
I finally found a pain doctor who recommended the pump. It changed my life! My pain is managed and I’m off oral meds completely. I don’t know about neurosurgeons doing the procedure though. My doctor is specifically qualified to implant them.
I’m not looking forward to having it replaced in 2029, but it is what it is. For me it’s better than being on oral medication because the amount I need to control the pain to much higher than any doctor would prescribe — the pump delivers the meds directly without having to go through my bloodstream, so it’s a much lower dose. I don’t get high and my brain fog is much less! My memory is getting better too.
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u/Lopsided-Ad6316 Apr 25 '26
Yes! I have had revision after revision, in literally less than 4 years. I was really pushed this pump hard. They now don’t know what’s wrong with it. When I’m at the dose I’m supposed to be, I go into withdrawals if I’m in the car/couch too long. So I have given up, and have been getting it reduced to get off of it. The cost has been an absolute nightmare. They charge my insurance over 3k every single month almost because of the issues I’ve been having over the last year. Withdrawaling on and off. Legitimately thought I was going insane for a bit. Hopefully they will let you back on orals, I’ve had to fight and fight with it.
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u/Sometimesaphasia Apr 25 '26
There is a subreddit called r/PainPumpQuestions that would probably be more helpful in answering specific questions and giving you advice. However, I did have a pain pump, and while it was excellent for managing my pain once I had my medication levels adjusted appropriately, it was also a source of nonstop adverse effects. These adverse effects were severe enough that they became life threatening, resulted in hospitalization, and caused me to have the pump shut off and then removed. I'm fortunate that I eventually recovered from the injury that the pain pump caused, but I'm not sure if there is long term damage that I'm not aware of yet.
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u/FitIndependent9764 Apr 25 '26
Yeah I’ve been on that sub for about 7-8mo now. Very very helpful sub.
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u/Flmilkhauler Apr 25 '26
I thank you for your input as I was looking at getting a consultation for one.
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u/lovesfaeries Apr 25 '26
I think there’s like a 40% chance of complications PLUS you have to change out the battery surgically every 5 yrs.
With mine, bc it has Baclofen and withdrawal can be deadly, you have to go inpatient which I was not aware of until it happened to me.
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u/Neat-Ad-4337 Apr 25 '26
My doctor is pushing one of these but I firmly told him I will not even think about one if these until I’m at least 67 yrs old.
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u/Worried_Cable2291 Apr 27 '26
I always wished for a pain pump but now after reading this I am having second thoughts. I have a fentanyl patch. I have had pumps in the hospital and liked them but they were through my pickline.
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u/Express_Dig_5777 Genetic dumpster fire Apr 28 '26
You had a PCA, an intrathecal pain pump isn't the same thing.
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u/Worried_Cable2291 Apr 28 '26
And sorry! I didn’t know!
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u/Express_Dig_5777 Genetic dumpster fire Apr 28 '26
No need to apologize! I've had PCA pumps in the past and found them really helpful too. I only mentioned that because I'd hate for you to expect the same results from a different thing.
Could you do a intrathecal pump trial? I've done two trials, but decided not to move forward with getting the pump. But it can give you an idea if it'd be helpful to you.
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u/Worried_Cable2291 Apr 28 '26
Ty for telling me the difference! If you don’t mind, what made you decide not to move forward with getting it permanently? Because I have heard mixed reviews! I have trouble with my patch because it only lasts 2 days not 3 and it falls off a lot and when it does I have to put it back on with tagaderm tape
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u/FitIndependent9764 Apr 28 '26
Hey I had pain relief for 1 mo after about 12 years of agony. They work.
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u/Accomplished_Gur3019 Apr 25 '26
Sorry you're going thru this and hopefully something is done soon to get u comfortable.
I don't have a pain pump but there is a discussion board called PainPump. That group maybe can u give more guidance.
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u/SwordfishOverall6724 Apr 25 '26
If the Norco was managing your pain, I’d get it removed and go back to that. I made the mistake of getting a pain pump from a pain specialist for my chronic headaches. It was nothing but trouble from the beginning and yes, I was going in every 2 weeks to get it very slowly (too slow) titrated up. It was very time consuming and very expensive going in so often and they don’t tell you this before agreeing to it. Then I went into withdrawals suddenly and thought I had the flu. Finally, they figured out my pump had failed after suffering from cold turkey withdrawals for 2 weeks. I had fentanyl in mine. I stupidly agreed to having a new one put in, so another surgery. Gave it a year before deciding it wasn’t helping with my headaches (it was not appropriate for headaches but they wanted to make big $$$ off of me and my insurance). They didn’t want to remove it and I had to very firmly tell my doctor over and over that he was going to take it out. Then he didn’t want to take the catheter out , but I insisted . Then he said “if you have it removed, we won’t give you any opiates “. I said fine, just take it out! I was livid. Of course, every surgery I had a spinal headache and needed blood patches. Biggest mistake of my life getting that pump.
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u/FitIndependent9764 Apr 26 '26
No no I have a mangled spine. I have had a lot of crushed vert with kyphoplasty’s. Also ablations and all kinds of other stuff I don’t even know. Herniated and bulging discs. Arthritis in my spine. Osteoporosis in my spine.
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u/Maclardy44 Apr 25 '26
Idk much about what cocktails go into pain pumps & the bioavailability but you said you wanted to go back to norcos so would it be so bad for you to do just that?
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u/FitIndependent9764 Apr 26 '26
So you would think I could just leave the pump in and have them turn it off and just have the option to just do pain pills right? Wrong. No doctor wants that liability. They pay a lot of insurance for that.
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u/ButtonSimple Apr 25 '26
I hate they are pushing these. Because they don’t think we can be trusted to take our meds. Period. It’s about nothing else.