Have you had a Pain Pump removed??

Posted by melby6069 @melby6069, Jul 23, 2024

This is my only option and it is really scary. Has anyone had a pain pump removed? What did you experience afterwards? Are there other options??

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for stillinpain @stillinpain

Yes it's aggravating until you get used to it, but has helped more than this pain pump.
I'm so glad that these devices are getting others out of the chronic pain. Perhaps one day, something will work for me.

Jump to this post

You and me both, brother!

REPLY

I havent had mine removed yet bit if they dont figure soemthing out I will get it removed. The pump keeps flipping even after reconstruction. Then we start back at .003 settingsp

REPLY
Profile picture for stillinpain @stillinpain

I have seen the doc twice lately and I've done what you just mentioned. I've had the flow of medication turned down 25% the 1st time and another 20% a few days ago.
My pain has not increased at all, but I am having some withdrawal symptoms. Sweating profusely and then chilling to the bone and some emotional changes.
I'm going back next week and have it turned down again. I'll finally get to 0 so I can turn it off or take it out. I do want another doc to do some investigating before I have it removed just in case the catheter is kinked, broken, or leaking.
Keep me informed and I will post my journey on here.

Jump to this post

Hi my sister is going on Wednesday to start turning the pump down. She was first told they would start her on 5 milligrams of morphine. Now her doctor has changed it to 15 milligrams. She is a wreck, she needs the pump out due to a blockage and cannot risk surgery due to her health. What oral meds have others been on during the turn down process.

REPLY
Profile picture for jade2020 @jade2020

Hi my sister is going on Wednesday to start turning the pump down. She was first told they would start her on 5 milligrams of morphine. Now her doctor has changed it to 15 milligrams. She is a wreck, she needs the pump out due to a blockage and cannot risk surgery due to her health. What oral meds have others been on during the turn down process.

Jump to this post

Five mg of morphine sounds like a lot. Also, just ramping the amount o fifteen mg is quite a jump! Typically, the out put is gradually increased by ten percent until a therapeutic level is reached(pain is reduced). Morphine is not always the best choice for everyone. My trial with morphine did nothing. A second trial with hydromorphone reduced my pain from an eight down to a two. I am currently try to get my pump output adjusted upward to a therapeutic level. Like her, I am also going to have the pump checked for problems.
Who, exactly, is doing all this? Sounds very questionable.

REPLY
Profile picture for archie2 @archie2

Hi- Archie here-- this has been a great discussion and Heisenbrrg hit most points I would make. I have had a tip blockage (granuloma) and had it surgically fixed. Tip placement is critical, but thats what you pay these guys for.
My pump improved my life from day 1. Since implant in 2007 , I’ve never needed nor taken oral pain meds. This is true for less than 15% of patients so I’ve been fortunate. Recently I had the pump output increased because of progressive arachnoiditis (neurogenic claudication) and it has helped immensely. I can’t imagine titrating off the pump. Next step, I’m getting a Boston Scientific Spinal Cord Stimulator on Feb 25. can’t wait.
Do you have a Medtronic pump? I had a Flowonix pump for a while with awful results. Just a thought.
Many thanks to Heisenberg for his thoughtful reply. Good advice!
Best to all, Archie

Jump to this post

Wow that's wonderful. I fortunately have good pain control with oral meds, but was evaluated for a pump some years ago. I've had 5 spinal surgeries and had post-op dura leaks after 2 of them, and the neurosurgeon told me unless I was out of options he wouldn't recommend for me. Apparently an op report says my dura is like tissue paper, so they think I would have chronic problem with CSF leaking. I have heard good things about them though, very nice it works so well for you.

REPLY
Profile picture for archie2 @archie2

Hi- Archie here-- this has been a great discussion and Heisenbrrg hit most points I would make. I have had a tip blockage (granuloma) and had it surgically fixed. Tip placement is critical, but thats what you pay these guys for.
My pump improved my life from day 1. Since implant in 2007 , I’ve never needed nor taken oral pain meds. This is true for less than 15% of patients so I’ve been fortunate. Recently I had the pump output increased because of progressive arachnoiditis (neurogenic claudication) and it has helped immensely. I can’t imagine titrating off the pump. Next step, I’m getting a Boston Scientific Spinal Cord Stimulator on Feb 25. can’t wait.
Do you have a Medtronic pump? I had a Flowonix pump for a while with awful results. Just a thought.
Many thanks to Heisenberg for his thoughtful reply. Good advice!
Best to all, Archie

Jump to this post

Hi, Archie. Wondering if you got the spinal cord stimulator yet and if it worked for you? You said that the pain pump was working well, so I am wondering why you would want another surgery to implant some other device. Hey, just an FYI... I got significant relief from my pump after more than two years. But, just for one day! I've been having my pump's out put cranked up again. For whatever reason I gave myself a bolus about three weeks ago and all the pain in my feet and legs disappeared. It was magical. Then, the next day it all came back. Bummer. Anyway, keep on keeping on.

REPLY
Profile picture for heisenberg34 @heisenberg34

Hi, Archie. Wondering if you got the spinal cord stimulator yet and if it worked for you? You said that the pain pump was working well, so I am wondering why you would want another surgery to implant some other device. Hey, just an FYI... I got significant relief from my pump after more than two years. But, just for one day! I've been having my pump's out put cranked up again. For whatever reason I gave myself a bolus about three weeks ago and all the pain in my feet and legs disappeared. It was magical. Then, the next day it all came back. Bummer. Anyway, keep on keeping on.

Jump to this post

Hi HB—
I did get the SCS in Feb but it has been a major failure and health risk. Turns out my body is so sensitive to the stimulation that it shut down my digestive system top to bottom— gastroparesis—so had to shut it off. Then re-tuned to different frequencies and same result. My next step is removal— Mayo and Boston Scientific don’t think I’m serious but trust me, it’s gonna go.
I love my pump— have good flow set up, along with 5 boluses per day. Worked a schedule where I can get a bolus before getting up in the AM to stay ahead of the pain— has helped— dilaudid in the pump— almost 20 years now. Some talk of Morphine but it’s being left to my choice. The Arachnoiditis is progressive—I‘m Dealing with more pain now than a year ago. My mind doesn’t work in terms of would or might— like Yoda says there is no try, there is only do or don’t do. These are hard times, but I’m now past 80 and tomorrow’s another day. Be well my friend— Archie

REPLY
Profile picture for archie2 @archie2

Hi HB—
I did get the SCS in Feb but it has been a major failure and health risk. Turns out my body is so sensitive to the stimulation that it shut down my digestive system top to bottom— gastroparesis—so had to shut it off. Then re-tuned to different frequencies and same result. My next step is removal— Mayo and Boston Scientific don’t think I’m serious but trust me, it’s gonna go.
I love my pump— have good flow set up, along with 5 boluses per day. Worked a schedule where I can get a bolus before getting up in the AM to stay ahead of the pain— has helped— dilaudid in the pump— almost 20 years now. Some talk of Morphine but it’s being left to my choice. The Arachnoiditis is progressive—I‘m Dealing with more pain now than a year ago. My mind doesn’t work in terms of would or might— like Yoda says there is no try, there is only do or don’t do. These are hard times, but I’m now past 80 and tomorrow’s another day. Be well my friend— Archie

Jump to this post

Thanks for the update. You’ve been on quite a ride. Sorry the SCS didn’t work out. Glad the pump has helped all these years. I’m hop to get some relief from my pump one of these days. Trial went well, had ONE DAY of relief s couple of weeks ago. Ah, such are te viccitudes of life.

REPLY
Please sign in or register to post a reply.