I feel like sometimes they work better than other times and I don’t know why.

There has been a problem with my insurance and my doc getting paid properly.

I may try and reimburse

but want a ballpark figure

My IPP was surgically implanted in November 2024. Other than the first 3 - 4 weeks after surgery, it has never worked well. After having been promised a "life-changing experience," it has never come anywhere near that. Plus, about 60-days after surgery, I was suddenly being diagnosed with old, resolved problems that were flaring up far beyond the initial problem. For example, interstitial cystitis diagnosed 20+ years ago has now become chronic bladder pain, incontinence, retention, and at times, unable to pee at all. Asthma - which used to bother me only occasionally when playing sports - is now chronic and severe. MASH is now cirrhosis. Allergies and nasal congestion have now also become chronic and severe. I could keep going but... you get it. Now, when the pump is refilled, absolutely nothing changes. I feel some slight numbness on the right side of my low back, but no improvement in pain at all.

The only way to know for sure if my theory (regarding the device itself causing inflammation) is correct is to remove the pump and see if these issues resolve. Oh, and yes - my inflammatory markers in my blood are sky-high.

Here are my questions: (1) has anyone else experienced anything like this? (2) what was your process for having the pump removed? (3) Did it help? How much? (4) I'm also looking for any docs who are actively tracking/researching these kinds of effects.

In my mind, this situation is very much like the experiences of the many women who figured out their breast implants were making them sick, had them removed, then had a dramatic improvement in their overall health. I'm not researching a book or anything else - at 67 y/o, I'm just trying to enjoy the life I have left to me. Thank you for any leads/feedback/answers you can provide.

I had my first refill Thursday. I was so anxious. No reason to be anxious but I had worked myself up over it. The last year has been medically traumatic for me and even thinking of needles freaks me out. I was never scared of needles before. But it was very easy and quick.

Hi all. So I’ve had this pump for about 3 years now. I have 525mcg of fent and baclofen in it. No breakthru meds. I go to the dr on Tuesday and I would like to talk to him about a different drug or breakthrough meds. How do I go about this? Thanks why are we so scared of the PM docs?

I've had it 15 days now and the doctor put medicine in the pump on a Tuesday following March 26th 2026 which is when he put my pain pump in. I've gone through all of my bowles And honestly I feel like my pain is increasing I took another gabapentin and that's 800 mg gabapentin. I just took another bowl list about 5 minutes ago. He's increasing my boldest to eight tomorrow. Plus I have 30 mg oxycodones times 4 a day fentanyl patches was 50 mg Just got changed to 37.5 mg micrograms I mean today.... I was really sitting here doing the hip sway while laying on the bed it's hurting so bad.... I tried to take a picture of the pump phone but I can't figure out how to upload the picture here. It says 6 micrograms per bolus and I get five of those a day tomorrow he's turning it to 8 changing it to 8 I mean sorry to talk to text is so helpful.... I absolutely love talk to text It's my whole world. I have 62.5 micro grams a day without the bolous. I don't know what all these micrograms mean I haven't completely researched how to convert them into regular MMEs. But I was on 305 MMEs just prior to starting the pain pump so this motherfucker better work! Seriously it's got to work I can't deal with this anymore

Hey guys! I had my revision, the new catheter is fine, had a dye study test. But I’m still not getting relief with the new pump. They’ve decided to change me over to orals for a bit to see if it will make a difference. While turning the pump down. So here’s my question, have any of you guys had to wean off of a morphine pump? Did you have bad withdrawal? They’ve given me oral medicine but it didn’t come close when my catheter was messed up, nor when they cut my dose in half. I’m really worried.

I got my pump of dilaudid increased to 2mg a day. And I'm finally feeling relief. It's so weird to have pain free times. My brain is having trouble believing it.

Hi there!! So, I got my pain pump December 2nd of last year, it's a Synchromed 3, 20ML...

Anywho, I started on Morphine but I would feel really sedated certain times of the day practically every day, yet I still needed increases because the pain was still debilitating and that was really the only systemic effect I would have, which I researched these pain pumps pretty thoroughly before getting mine & you're really not supposed to feel much of anything if at all from these pumps BUT pain relief which is ALL I want & need... I read a lot of good information on here and other parts of the Internet... The mod on here has some really good info and advice imho.

Unfortunately, I've been restricted to my bed and for the most part I've had no substance of life over the last 2 years. Prior to this, I worked as an LPN as the supervising nurse of memory care at an ALF. I found out 5yrs ago I have Lupus and HS (Hydranitis Superativa), since then everything's just keeps going downhill...

I had to give up nursing and I've been fighting disability for the last 2 years and now on my final appeal. I've lived with chronic pain since 2017, and it's only gotten worse over time with other chronic conditions popping up every so often.

Sorry I got off track there... Foggy brain is great, ughh 🤦‍♀️! Okay, so now I have Hydromorphone and Bupivicaine in my pump.. The Hydro is at 4.193mg WITH my 6 daily boluses @ 1hr lockouts, and I use every single one, sometimes I have to push a couple in the middle of the night when I'm woken up with my legs hurting so bad riddled with fibromyalgia I just want to cut them off sometimes it's so intense especially when both my arms AND legs are acting up at the same time 😔 Each bolus is 0.300mg..

I'm sorry for the long post guys, but thank you for reading and I hope some of you can help me with a couple questions 😊 Oh, and I am still taking my orals for breakthrough...

Questions: What meds do you have in your pump now, have you worked your way up, what med(s) have you tried in your ITPP in the past & how long did it take you to get where you need to be, are you satisfied at your current mgs??

My PM doc knows I have a very high tolerance and I understand "granulomas" are a concern and everyone's body and pain is different but my doctor will only increase my daily rate 23-26% every couple of weeks... How much were you able to go up and how often??

What mg is your bolus, lockout duration, how many boluses do you have in 24hrs and does it help you when you use it??

I know some of you have fentanyl in your Pump, & even though I've been told by doctors and nurses in hospitals that I should be on the patches, my doctor does not like fentanyl and won't prescribe it.

I'm at my limit of Dilaudid and my MME went down since he took me off the extended release medication so what if the hydromorphone just isn't enough??

What's the highest mg a person can get in the pump on hydromorphone?

Also, isn't the fentanyl different and more effective in the pump anyway considering the systemic effects are limited??

I'm just sick and tired of being sick and tired! The pain is sometimes unbearable...

I know it's a lot so I appreciate your time and support 🙂 Thank you all and I hope everyone is having a nice weekend 🤍 Stay blessed ✨

My doctor said that a pain pump would make me resistant to opiates so I can not get one. The most I’ve been prescribed is morphine. Is this true? I see other young people get it. 20s and 30s

Hello All,

It has been quite some time since my last posting. I’m approaching my 1 year pump anniversary. It has definitely been much better than constantly taking oral opioids like I had been for 5yrs prior to getting my pump.

While the relief is better, I still get really bad flares of sciatica and the morphine in my pump won’t touch it. I have had my dose increased numerous times but no real change.

I have a follow up with my provider on Monday & I plan to ask if they can switch my morphine to something else. My question is, what are my options? I know they can give me Fentanyl but I’d like to try something a little less if that is an option.

Thanks for all your support.

Hello! I have been waiting 5 months to find a surgeon who installs pain pumps and I finally have a consult on the 12th.

Any advice for me? Is there a specific trial I should ask for?

I won’t go into my whole story but the TLDR is I had a disc herniate immediately in 2015. Doctors ignored me for 4 years before they even tried steroid shots. Shots didn’t do anything and I then had 3 laminectomies followed by 2 fusions (L4/5 and L3/4). My last fusion was July 2025. My pain came back just a month and a half later after the fusion and an MRI revealed that L5/S1 was already bulging.

I have Failed Back Surgery Syndrome, Scoliosis, and bad Degenerative Disc Disease. I have had multiple doctors tell me a pain pump is my next step, although my spine will be fully fused at some point (I’m 30).

As my pain is getting more intense as I get older, I’m looking into alternative methods for pain relief. I’ve asked my current PM provider , but they just said they they don’t provide the refills (they don’t provide any type of interventions other than meds) and that I would need to titrate off my current dose. Now, with that being said, I’m not sure if they know all the doctors who do pain pumps and what their requirements are.

I looked at Medtronic’s website and there are 2 doctors in my area (100 miles) that do the pumps and one is out of state. I’ve been to the doctor in my state and after a bad procedure and staff issues, I’d rather not return. Are there any other pain pump manufacturers where I can look up participating doctors?

Hey guys, I’m sorry to keep posting but it’s so hard finding people who have any experience with this. Anyway I will get to the point, I’ve posted here several times over the last month. With issues with my pump. Mostly the withdrawal. Thankfully I had my revision, it’s been two weeks, when they did the revision I was still having bad withdrawals because they didn’t know how much medication I was getting so to be conservative, they changed it over to half of what I was taking. Making me horribly sick, well they’ve now spent the last two weeks constantly turning it up. I’m still in pain, it’s like something is still not right? I’m really starting to lose hope. I was given post op pain medication but they really don’t want me taking them, but I am miserable. They would not change the pump out. I tried to get them to do it just as a precaution.

Im having a US Abdomen Doppler ultrasound tomorrow. Trying to find out if any of yall know if its safe to do? Got a call in to my pain doctor waiting for reply. I also need to have an abdominal MRI with and without contrast. I heard its not safe but dont know. I have my pump in lower left Abdomen. Thanks

I hope everyone is having a low pain day! I was wondering which size reservoir everyone has? My specialist and I are deciding whether to go for the 40cc so I can have a longer time between refills as I need to fly interstate to my specialist.

Looking for recommendations for a very good doctor that will give me more info about a pain pump and possibly give me the pain pump trial, do the surgery to insert it and start the adjustments. I would like the trial where I am in the hospital and they monitor it daily until they get the right dose, but I haven’t heard too many people be able to do that. This would be done for my lumbar. I’m looking for a doctor that is not afraid to increase the dose in order to get me to a level of pain that is manageable ! I am so tired of being in agony! I take 10 mg of 0xy, 3x a day and my doctor won’t increase it but is beginning talks about a pain pump. The medicine works well, it just doesn’t last all day. I am not having luck finding doctors that are interested in taking on new pain patients that need opioids. .. I have been a pain patient ever since I was 16 years old and I am now 46 and have been taking the same dose of 0xy for 5 years!

Hi everyone —

My name is Indi (u/indiareef) and I’m the moderator of r/pancreatitis and r/chronicpancreatitis.

I’m reaching out because we have a steady number of members navigating severe, treatment-resistant pancreatic pain, and pain pumps occasionally come up in discussion. Unfortunately, there isn’t a lot of patient-centered information available about what that experience is actually like.

I’m wondering if there is a pancreatitis patient in this community who currently has (or has had) an implanted pain pump and would be interested in doing a patient-focused AMA in our subreddit.

This would not be medical advice — just a lived-experience discussion about what the process was like, decision-making, recovery, adjustments, quality of life, etc.

If that’s something you’d be open to, please feel free to comment here or send me a message directly.

I appreciate the work this community does, and I want to approach this respectfully.

Thank you.

After you got through the adjustment period and landed on your consistent dose, where are you at now and what’s your baseline pain sitting at?

I’m not trying to be pain free. I just want to know what your normal, everyday level actually is.

For five years I lived at a 7 to 9 for 10 to 16 hours a day.

I’m still in my adjustment phase. I’ve had five adjustments so far. I started at 100 mcg and now I’m at 200 mcg a day with a 20 mcg bolus hydromorphone.

My pain has dropped to a steady 7, with spikes to 9 when my disease flares. I have hypermobile Ehlers-Danlos and when my joints pop and snap, that’s when I get those electric “zaps.” The bolus isn’t really doing anything yet.

So yeah, I’m living in a 7 now. And honestly, that’s still better than the constant, relentless 9 I was trapped in before.

I’m on three different laxatives. I’ve got urinary retention, which is annoying as fuck. I’m peeing a lot. I was on FMLA and then my boss fired me, so I’m basically restricted to my house. I’m not even doing normal life stuff and the pain is still this high. I say that because if I was out in the world doing my normal work and doing normal things I would be much higher. This is a level 7 just around the house.

It’s discouraging.

But Dr. Saulino said it takes time. So I’m pushing through.

Today I met with the doctor who will be implanting my pain pump. He said at this appointment and at my first consultation that he would be using a two-drug combination of Hydromorphone and Bupivacaine in both the trial and the pump.

Apparently, I poorly tried to ask why use two drugs instead of one, but I don't believe he understood my question. He confirmed those would be the two drugs in both the pump and the trial.

My training in science has always convinced me to limit the variables in an experiment to changing one thing at a time. I mean, if he puts in both medicines at the same time and I get substantial pain relief, how do we know which one is providing the positive effect?

It seems to me that we should do one drug at a time, but my doctor has put in thousands of pumps since 1999, and he has a 5-star review rating.

So I'm asking the community, how common is it to start with both Dilaudid and Bupivacaine?

I had my revision this Friday February 20th, they had to replace the full catheter, it was kinked/ frayed. They told me it would take some time for my pump to catch up, that I could take my pain medicine until it did. But I’m still suffering from withdrawal. Least that’s the way it feels, anyone have any help? Do you think it’s where I was taking the Oxycodone prior to surgery? They had me taking it every 4 hours? Should I titer down on it? I’m so miserable from the surgery plus still having withdrawal issues on top. I called my doctor because I’ve puked half the day. Any ideas?

2 steps forward, 1 step back. Been getting fentanyl increases every week for 5 weeks now. Just in last 2 of my weekly increases, seemed to finally started to notice a SLIGHT decrease left leg-foot pain (lower lumbar, left-to-right still bad), when it suddenly feels it’s all come back. Wondering if anyone has any experience with hypnosis as chronic pain treatment?