Has anyone had an Intrathecal Pain Pump w Morphine Removed?

I am on the cusp of deciding to have my pump removed. It is either move the catheter higher up ( very scary!! I have so much scar tissue , severe narrowing and more hardware to navigate) or just remove the pump because it's not helping with my cervical pain. It never dawned on me how problematic getting off the pump would become!! Are you on orals? This is my fusion. Are you glad you made this decision? I hate having a pump in my body. It actually hurts where they put it. It's too big and it rubs in some painful places . I also fear mechanical failure!!!
I pray you get relief soon!!!!

@peebs60

I am very happy that I’ve had the pump removed.. So far. I am on orals but only four Norco 5/325 a day. But I am basically pain free at this point. Just the withdrawals are my issue. The intermittent withdrawal symptoms I experienced over the years with the pump were horrible. I was on a pretty low dose intrathecally; .68 mg / 24 hrs and four small bolus’s as needed. I understand your predicament. I only have eight levels fused in my spine. Yours is significantly more. I hope you have good doctors and can get a second or even third opinion on your best plan moving forward. I hope you find a solution that offers comfort.

@toddmpeterson Opiate withdrawal only occurs, for the most part anyways, when those receptors are deprived of the accustomed dosage. So the pump either failed to deliver the normal dosage at those times or the use of the bolus increased the withdrawal threshold. Or, perhaps it was something else-the body is so complicated. I had a Medtronic intrathecal pain pump removed after years of use. It dosed morphine and other non narcotics and was very effective without so many of those awful side effects-so overall it was a plus. The removal was problem free but the effects of not having any morphine in my system after all those years were devastating, although I was thankfully pain free. I did gradually (over many many, months) lower the morphine to the lowest dilution and flow the pump would deliver yet I still experienced terrible withdrawal. The pump delivered a dosage of morphine that simply was not feasible orally, so whatever oral narcotic that I took at the out set would not be sufficient to avoid withdrawal initially. Maybe your experience will be different, but keep that in mind. And yes it is totally miserable to be completely out of sorts both mentally and physically where absolutely no position or situation is even close to being comfortable.

@rockon79 Thank you for sharing your experience. I hope to not have to go through what I’m experiencing for weeks,
Let alone months. I have seen improvements to my appetite, bowel movements, runny nose, sneezing and enhanced smell. Very minor improvement in restlessness as I was able to lay down and sleep for twenty minutes the first time after two sleepless nights. But the restlessness is very fickle. One minute I’m feeling like, ah, I can sit down. Then a second later I’m popping up out of my chair because I absolutely cannot sit still. It’s like we trade one problem (pain) for another (the reality of extended opioid use). Did your doctor put you on Butrans patches to do the final weaning? That’s what my pain management doctor said we’d do. Unfortunately I don’t see him until Tuesday morning. Getting off the intrathecal low dose is significantly harder than I expected.

@toddmpeterson
I'm so sorry you are going through this! Eight levels is significant! Do the say how long this will go on for you? I'm surprised they didn't offer butrans patches. Do you notice any improvement as time goes on? Are you experiencing any deterioration with the unfused vertebrae? It's not often I get to talk to anyone who can relate on so many levels.

@peebs60 My pain management doctor was confident that my taper down on the pump from .68 mg to .099 mg / 24 hr over three months was likely sufficient as I had experienced no withdrawal symptoms during any of the reductions. Some pain increase but minor in the big picture. He mentioned that he would put me on Butrans patches if I did experience withdrawal symptoms. I think he felt the post pump removal surgery opioid would handle any withdrawal. The surgeon prescribed me 5/325 norcos. This has proved more than enough for the pain. But seriously lacking as it relates to withdrawal symptoms. In hindsight, I think we (pain management doctor and me) should have expected this likelihood and had the Butrans patches prescribed and in hand. Especially considering it’s a three day weekend. Also adding to the complication is this is all workers comp related and in California, that makes everything tougher to get approved. In any case, the withdrawal symptoms have subsided substantially. All except enhanced smell / taste and worst of all, restlessness / inability to sit or lay down for more than a few minutes at a time, which persist. But it does seem like they are slowly improving. I have not slept more than 10 minutes at a time since Friday at midnight when left leg twitches woke me up. But, on the positive side, my pain has not increased with the removal of the pain pump. Which is strange considering I have permanent nerve damage affecting my left leg. I am new to this site and am glad to connect with people dealing with similar pain issues and the affects of the medications we use to simply try to live our lives.

@toddmpeterson After the pump removal the doctor that managed my pain pump sent me home with 20 15 mg morphine tablets which was woefully inadequate to deal with that type of withdrawal. He either didn't know or care -which I resent. He certainly didn't discuss Butrans patches or anything like that. I have heard of methadone as a step down to ease opiate withdrawal and it is an agonist as is Buprenorphine although much stronger. They are both prescription narcotics and will create a dependency (therefore more tapering off from yet another narcotic-after a while some of us just have to "man up" and deal with it if we want to be truly free-that's what I had to do anyways). Be careful not to trade one dependency for another although many in the medical field feel that these two are less harmful than the morphine and the like (not). BTW your last sentence is absolutely correct-I wish you well.

@rockon79 thank you for your insight and sharing your experience. It seems like our doctors either don’t understand what we’re going through with cessation of opioids after years of necessary use, or don’t care. I think the demonization of pain management and the use of opioids has had a significant negative impact on the care I have received. And that was with an intrathecal pain pump that only needed to be refilled every six months. My fight for pain treatment was part of the reason I opted for a pain pump. After years of shoddy oversight, the DEA and FDA went full nuclear against opioids and those who needed them for legitimate pain control. I was forced to lower my daily opioid level to less than I could live with. I was in excruciating pain and moved to the pain pump with and at the direction of my pain management doctor. As my pain issue was work related I had the additional hurdle of workers comp carrier review for payment approval for treatments. After a successful pain pump trail, workers comp rejected the pump. I fought them for six months before it was approved. Pain pump installed in 11/19. Six months later, I’m ready to go in for my first pump refill to learn that the W/C adjuster DENIED the pump refill.. I was shocked at their incompetence. So my next fight started. Finally, I spoke with the adjusters manager and conveyed the problem with their decision and the refill was approved. This type of incompetence I experienced was the norm, not the outlier.

In any case, pain management with opioids went nuts, in my experience. This resulted in my pain management doctors decision to retire. He said it just wasn’t worth the headache and added scrutiny and paperwork. He said he was spending about 80% of his time doing peer to peer reviews on treatment denials, newly required reports and paperwork. He said the denials were basically 100% as it related to anything other than minor opioid treatment post operative. Long term opioid patients and treatment were under attack.

Sorry for the ramble. My treatment and experience still piss me off….

You hit the nail on the head! At some point, I simply have to “Man up” and get opioid free (with one big caveat…. If my pain is manageable with other, none opioid treatment. Which is my goal). Trading one opioid for another is not acceptable.

I am hopeful I may not need to go on a patch to beat this withdrawal. I’m on day four. Last night, I was (finally) able to sleep. Two stints at four hour each. This after maybe 45 minutes sleep for the previous two and a half nights. I still have other, less intrusive withdrawal symptoms. I can push through those withdrawal symptoms. Not being able to sleep for days on end, I cannot handle. So I have an appointment tomorrow morning with my pain management doctor. It will be an interesting appointment. He is an anesthesiologist so I expect him to have a good grasp on the withdrawal symptoms progression. I want to know am I “out of the woods?” Or, will I have weeks (months) of ups and downs, especially as it relates to sleep.

Thanks again for your experience. I’m glad to hear that I’m not alone in wondering if you just have to cut the cord and move on from opioids. If I knew then what I know now, I would not have had the intrathecal pain pump installed.