I have a Pain pump with Morphine, I'm still in so much Pain

@bilt4pain Do you know how the catheter for the pain pump is positioned to help foot and leg pain? Is it mostly by bathing the nerves that run to the feet with medicine? I’m getting a pain pump soon, and they claim it might help with my back, leg and feet pain. That’s the goal.

@jthomas - The catheter goes directly from pump, around my waist and into the intrathecal space, that contains your CSF(spinal fluid, that bathes your spine in the medication. It does the entire spine and cannot be directed to your feet and legs. If the nerves for your leg & foot are exposed to it, then it should help them. The pump doesn’t provide general pain relief to your systemic pain, just the nerves exposed in the intrathecal space. I still have toe pain. No doctor can tell if it’s a neuropathy or radicular(pain radiating down your leg to foot. It has limited my toe pain from all toes, to just the big toe. However I also have a spinal cord stimulator(SCS) that when set to Tingle mode(which is like a TENS unit, but does a significantly bigger area, it vibrates my entire lower body from waist to toes. While it’s running I don’t have toe or knee pain and my knee is getting replaced in a month. I hope that helps. If you need to ask more, do it. I try to keep on Mayo connect. It’s the best patient platform I’ve found in my 19 year pain journey. In the pictures, you’ll see my hip replacement, drug pump, then SCS . The rest is my spine. Was in 9+ pain before it. Got down to a 5. Now I’m getting use to the dosage and have climbed back up to 6.5-7. If you get a Medtronic pump, i emplore you to get the 40ml unit, not the 20. Half the refill trips.

@heisenberg34

This is my 2nd pump... My trial was 10 years ago. They put a 20 mL pump in and said I was on way too much morphine, i guess that's why it doesn't work at 1 mg. They said if dilaudid doesn't work they have fentynol. If that doesn't work im S.O.L. I'm going to see a spine surgeon next week, this will be number 8. My spine is fused from L2 to S1, i have adjacent segment disease at L1, bent rods, retrolisthesis and they say they will probably have to do a revision surgury and fuse T9 to pelvis. I have to go to Washington University in St. Louis where they specialize in complicated surgery. Hopefully they can do something to get the pressure off my spinal cord at L1, they say im at high risk for Cauda Equina syndrome and feeling symptoms of it...
They should change your medicine, i am getting a little relief but not much, but we have another 6 weeks to get to max dose, i will also get 4 bolus doses per day.

@bilt4pain Yes, that helps a lot. My surgeon’s note says "The procedure involves placing the catheter at T9-10 for back pain and slightly lower for leg pain.” I also have knee and foot pain, so thanks for explaining this to me. I spent a few years going from doctor to doctor asking is it neuropathy or radiculopathy? It’s interesting to hear that I am not the only one, because so many doctors looked at me like I was the only person they had met like me. I’m starting with saline in the pump, and then moving to extremely low doses of hydromorphone and bupivicaine, so I guess it will be a while before know how much pain relief I might get, and what pains won’t be touched by the pain pump.

Since I’m asking questions, the doctors notes also say "The patient was informed about the possibility of infection, device-related complications such as catheter kinking or breaking, and the need for a binder post-surgery to prevent fluid accumulation. He was advised to avoid strenuous activities for a minimum of 6 weeks post-surgery to allow for proper healing. The patient was also educated about the potential for headaches due to spinal fluid leakage and the importance of bed rest and caffeine intake to manage this symptom. The risk of nerve damage was discussed, although it is very uncommon.” Anything about the post-surgery limitations you think I should know. I’m just thinking no bending lifting or twisting, just like all my previous back surgeries.

I am curious about the size of the pump. I get the impression I am getting the 20ml, but it hasn’t been discussed. I’m not sure where I got the idea it’s going to be the 20 ml, but I might have read it in some of the previous doctor’s notes, or I might have heard the doctor say something to the nurse about it. I guess I should ask. Thanks so much for helping me with realistic expectations. I feel like that is one of the more important parts about surgery because I feel like the surgeons don’t always do a good job setting expectations.

Glad I could help. If I didn’t advocate for myself I’d have been screwed numerous times. Doctors are human, have bad days, omitted stuff etc. I’m sure not on purpose. I got the same speech post surgery. I was already totally titanium by then so I couldn’t bed, lift or twist in my entire torso. Never had a problem with post surgery. But they have to tell you anyway. I did have a peculiar side effect. I could no longer drink. The smell of any alcohol, mimosas to single malts made me sick to my stomach. I don’t miss it or even remember it. The thing was I became a vegetarian. Just happened. The last and most important thing is pump size. If it’s Medtronics (and I would insist it was) DO NOT GET THE 20 ml. I did start on morphine as hydromorphone was not an approved drug for the pump yet. I’m up to 12.1mg of morphine a day. Got refilled every 27 days with the 20ml. I got the 40ml, found out he would not give anymore increases !? He is adding 5% bupivacaine to the morphine next refill. Hope it helps. But going a solid 60 days between refills changes everything for the better for me. Who knows, with the dilaudid you might only need the 20, but I’d ere with caution and lobby for the 40. The size difference is 1/4” thicker. Same 3” diameter. About the size of a hockey puck. Good luck and have a blessed day.

So many sad stories regarding the pain pump. It's a shame that so many get decent relief with the trial but get little or no pain relief(like me) from the permanent implant. What still baffles me is how I got ONE DAY of great pain relief about six months ago. I was sure I had turned the corner with may pain journey, but all the pain returned the next day. I've had the pump tested several times and all is well.

@kaki068 there is a clinical process that the doctor must follow in order to assess you for the pain pump. The one thing that is a requirement for you as a patient is you must have failed oral pain medications by documentation in the medical record of these failures. Insurance companies pay a lot for the procedure and ongoing visits for drug addition visits so they are cautious.

@heisenberg34 Thank You for your response, it's taken 6 1/2 months for them to get me down to 0.10 Morphine then they put Saline in my Intrathecal pain pump to flush out all of the Morphine, Then they had to remove all of the saline that they could get out of my purse, so I've had to wait 24 hours for the saline to be finished, Then they put in 0.0125 of the hydromorphone, I'm just starting to feel it, but it's a small dosage, ( it was supposed to be 0.015 mgs, I have 3 Pain Pump Adjustments over the next 3 weeks, I can tell it's working better than the morphine, because I really never felt it working, I tried to get there to switch me out within the first 2-3 months but it didn't work, but I'm sure The Hydromorphone will work because I never had it before, I did have one prescription filled once they wouldn't fill it again without a extended release to go with it except they don't make a extended release Hydromorphone, so I had to settle for morphine instant release in extended release so I build up a tolerance against morphine, I wish I could have convinced him sooner but at least I'm on the right track now I hope everything goes well with you, Thanks Michael

@bilt4pain I was on the fentanyl patch and it all leaked out through my skin so I was in the hospital for 4 days, the doctor removed the fentanyl patch & put me on Morphine oral medication, due to the laws in the State of Florida, after that I had a spinal cord simulator & it helped but not much, I also was on the Morphine instant & extended release which Both were doing nothing so my pain doctor recommended a Intratracheal pain pump, so he referred me to his best friend who does install the Intrathecal pain pump, but I have a high tolerance for morphine so I tried to get them to put hydromorphone from the beginning but they start off with morphine and it just didn't work so I finally just got into the Hydromorphone, I'm sure it will work because I've never been on it before , I didn't think the fitting all would work because I was on it for a while and then it leaked into my system, I have my appendix out and I was in the recovery room can they give me a gram of morphine and a half a gram of fentanyl and it did nothing so I told them to give me Dilaudid and they gave me a gram of Dilaudid and it worked instantly I was out of pain, I certainly hope everything works out for you thanks Michael

@bilt4pain 40ml pump