Pain pump failure

Posted by heisenberg34 @heisenberg34, Apr 7, 2024

I had the Medtronics pain pump implanted a year ago. Nothing else had worked to relieve my severe lower back pain which radiated down to my buttocks, legs and feet. My spinal cord stimulator also stopped providing any pain relief. I had the pump output increased six to eight times with just a few days of decent relief. Then we moved to another state. New pain doc has increased the output 5 or 6 times. With my pain still hovering between a 7 and a 9, I was desperate. I took an old oxycodone which actually helped. But the pain amped up after a few days so I went back and he upped the dosage by 30% (quite drastic). By the end of the day, The pain had turned into a numb feeling. That night I could not sleep. I was on the verge of nausea and felt like a zombie. How much dosage is too much? I am still in bad pain unless I give myself a bolus, which sends me back into the numb, zombie state. I am afraid that I am in an overdose situation. My voicemail to the doc with these concerns has gone unanswered. How can a pain pump not relieve pain at this level? Really looking for someone with similar expereince and what you ultimately did.

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alexandercrps | @alexandercrps | 15 hours ago

In reply to @jthomas458 "@alexandercrps @alexandercrps, I really appreciate your thoughtful response. You’ve perfectly captured my thoughts on why I..." + (show)

@jthomas458

@alexandercrps @alexandercrps, I really appreciate your thoughtful response. You’ve perfectly captured my thoughts on why I might not want to go through with this surgery. Like many people thinking about a pain pump, I’ve had a lot of surgeries and have thought through all the possible outcomes, both good and bad. Most surgeries have a clear end result (they work or they don’t), but this one needs ongoing support and tweaking, even if the first surgery goes well. So, I really appreciate what you’re saying about the need for an experienced, dedicated team to support me with the pump for the rest of my life. My bedridden sister, who had a bad SCS surgery, reminds me every day of the risks involved. Years ago, I moved from a big city with great medical facilities to a smaller town, which meant traveling for the same level of medical specialty and expertise. I should think about this more when deciding on a pain pump. My surgery is scheduled with a top-notch neurosurgeon at a big university hospital, and the semi-retired pain management doctor has been there for 40 years and has a dedicated team of PAs and other nurses. Their pain pump program has 1,300 patients, but it’s still 100 miles away from me. If this decision becomes a nightmare, I’ll need to make some tough adjustments. I’ve considered moving closer to the hospital or ultimately taking the pump out. However, I’ve learned from others that these adjustments would be challenging, and I need to survive the initial surgery and a year or two of hospital visits before considering these options. I have to admit, I’m counting on a lot of things to go well for this decision to even be tenable. Even in the best case scenario, I will have a lot of trips back and forth to the pain clinic. Like you said, only the semi-retired pain management doctor and one of his nurses will be able to make adjustments to the pump and the medications. Thanks for giving me the honest feedback I need to reconsider this decision in the next couple of weeks, before it’s too late. No words can express how much I appreciate the advice and food for thought you’ve shared with me. Thank You!

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@jthomas458 My friend, I hear you I am very grateful that you found my advice useful.
My comments and posts on this forum and every piece of advice posted here always come from a place of love, and from direct hard learned life experiences. I am not a doctor so when you read a thread or
a post hers just always remember these are very real people sharing their stories and their traumas; and we are people who chose to share how much we suffer. Yet I cannot express often enough how important it is to always appreciate that every case, and every human being on here is so very different. So e.g. right now we have one member on here who I am writing with, who recently got the exact same mix of meds in his pump as I have in mine, yet in his case these same meds caused massive havoc on this person, and I believe is suffering terrible side effects and dealing with a lot of complications, as we speak. This proves how important it is to always appreciate that what works for one may not work at all for the other. So when your case popped up I felt a sense of duty to reply to you, and to do so immediately, so that you could have as much valuable updated and patient focused info regarding these pumps as possible before making your final decision. Honestly in your case and it I were you I would stick with oral meds if you tolerate them and I also think you potentially would be better off with a SCS, especially given your life situation and zip code; I would say this: an SCS is a lot less complicated than the pain pump. And also hear this my fellow sufferers: when a doctor says he doesn’t “like” this or that …like “I don’t like the pumps” or smth similar..than that is doctor code for “I have no idea what I’m doing!” This for real what happened to me, my first pm doc said he didn’t “like” the pumps. Later I learned it was code for ignorance. With the SCS, if both trial and implant were done by the very best surgeon who will place those leads 100% correctly and if done by an expert without any “fuckups” (excuse my French) inside your spine, then a SCS could be a great option. But those who consider getting a pain pump must consider their zip code first. If you happen to fall ill and additionally get a horrible chronic disease such as CRPS or cancer, you either need to move to a place where
you get the best care, or alternatively seek out the absolute best in the state/city you are in. I luckily live in South Texas where we have ample choice of excellent pain management docs and hospital systems too who can help with the more serious cases..we also have great warm weather here which truly is a blessing when you have to suffer through lower limb CRPS type 2 like me for the rest of my life. Warm weather, a sound health insurance and great medical expertise is the reason I am able to write these words to you right now. Bless all of you reading this, cause if you do read these posts I know you are hurting. All my love,
A