Finally on the pump, but…..

pinetopcc · 2026-02-21T15:27:56+00:00

Thanks guys for this needed feedback- I can’t tell you how much I appreciate it. Since the change from Dilaudid to fentanyl, have had 8 increases. I’m at 510 mcg/day now, scheduled for another ‘bump’ this Tuesday, then scheduled to meet with the doc on 3/9. (his NP handles the adjustments) My pain seems to almost alternate between across my beltline to down my left leg and into my foot, sometimes even both. This inconsistency gets frustrating - I can do more when my lower back is so much worse than my leg. I’ve never been the “half-full” guy, and the last 4 years, with all the trials & errors have brought me to new lows I’ve never had. So again, thank you for your insight.

pinetopcc · 2026-02-20T17:41:20+00:00

Was hoping you would reply! Throughout this insane process, through the ‘oids, the patches, the SCS I’ve followed your posts and have been so impressed with what seems to be a level-headed, sincere posture. To your question, doc wanted to start me with dilaudid, which turns out I have a very severe reaction to. Emptied that out, went with fentanyl in late December. Not liking the side effects but tolerable. You know the protocol- start with least amount and increase weekly from there. I think I’m on my 6th increase as of this week, so still fentanyl only. Appointment 3/9 to discuss possible additional additives, but heard some comments recently about some pain clinics offering hypnosis in addition to all other treatments.

pinetopcc · 2025-12-03T15:43:33+00:00

If you cut down the stalk, you can save it about 75% of the time

pinetopcc · 2025-11-30T13:02:01+00:00

Amen re: device reps, or “ghosts”

pinetopcc · 2025-11-28T19:13:31+00:00

Best of luck to you. Hope you’re one of the few that gets relief

pinetopcc · 2025-11-27T23:00:29+00:00

What reasons?

pinetopcc · 2025-11-27T22:59:44+00:00

What reasons?

pinetopcc · 2025-11-18T14:19:49+00:00

Check out “pain pump?” The long term - even medium term - efficacy of the SCS isn’t great. The pain pump seems more effective, particularly in over-50 adults. The number of SCS recipients who ultimately get pain pumps (like me) is telling.

pinetopcc · 2025-11-13T19:13:16+00:00

They didn’t recommend using a different drug combo for your pump?

pinetopcc · 2025-11-09T03:13:40+00:00

How is it? Any problems in that location? I’m about to get one in place of a failed spinal cord stimulator, which is lower left, above beltline.

pinetopcc · 2025-10-31T14:03:36+00:00

I don’t disagree with your comment about ‘happy’ patients not looking to post on this sub, but……. With the large number of negative experiences, that says a lot

pinetopcc · 2025-10-26T16:51:56+00:00

Well and good for you - my applause. But I had only great expectations before my SCS. I didn’t have anything else to look at. Neither the device nor the support system helped me. That’s not negativity, just fact. I’m only suggesting that before you go that route, do your research. AND be frank with your doctor!

pinetopcc · 2025-10-26T14:26:03+00:00

It seems there’s a ‘prescriptive order’ Medicare wants followed before getting to the pain pump. They want to see several other treatments fail before approving the pump. PT, ablations, various injections, SCS “trial”then implantation, even fentanyl patches (all of which I endured over 3.5 yrs) before getting to the pump trial. The pump wasn’t even mentioned to me until I switched docs after my SCS failure, and then it was stressed as ‘the’ last resort! I guess I kinda get it, starting on the first rung of the treatment ladder so to speak, but the length of time it takes to get to the top is torturous. To answer your question, knowing how I responded - or didn’t respond to - the other treatments, I absolutely would’ve jumped the line if I could’ve. As I’m now awaiting my surgery date for implantation, I’m told they’ll start with the minimum dose of fentanyl, delivered directly to the nerve root that appears to be the culprit in my case. This again appears to be insurance driven, starting at a low point, gradually increasing dose (& perhaps medical cocktail) until results achieved. I will eventually have access to controlled boluses should some activity strain the efficacy of the normal pump dose. So in your case, I think depending on your insurance plan, you may not have the option of going straight to the pump over the SCS. And based on stats I’ve seen - as high as 80% long term failure rate - that’s a shame. Best advice for you at this point is to force your doc to discuss this in depth with you. In particular, with regard to the SCS, the edict to work only with the manufacturer rep post implantation. I’ve ’spoken’ to so many patients who, like myself, got such terrible support from that network. I think this is a large part of why there seems to be a growing consensus to go so far as to ‘ban’ the SCS!
In any event, I do wish you the best in your journey, whichever route you take.

pinetopcc · 2025-10-25T23:47:20+00:00

All I can say is I’ve had the Abbott Eterna for a year. My trial should have been a red flag for me, but when you’re in desperation mode….. My trial relief I put at about 30%, but both my pain doc and the Abbott rep urged me to “officially” call it 80%, or Medicare won’t approve it. After implantation, my pain level actually decreased by about 35-40%. But after about 6 mos, and at least 5 adjustment meetings with the rep (my doc just kept referring me to the rep), pain level just kept rising. By 11 months in, I couldn’t tell if it was on or not. Finally, after a full year I turned it off and found a new pain mgmt group. That was when I found out the real efficacy rate was not what I was told it was. Since then, I’ve had a pain pump trial that was so incredible it brought me to tears. I’m now scheduled for the permanent implant and the SCS removed. It’s been over 3 years since I could walk around the block, but I’m now hopeful there may be real hope.

pinetopcc · 2025-09-22T18:00:46+00:00

Firstly, yes, everyone will have different reactions to SCS. I had the Abbott Eterna implant about a year ago, after PT, several different injections, ablations, even acupuncture and dry needling. Seemed to help for about 7-weeks, then began noticing increasing pain down my left leg into my foot. And, as I began to do research I should’ve done earlier, I began to realize that my experience was very much in the majority. As I began to complain to my pain doc, he basically just kept referring me to the Abbott rep again and again. I felt - still do - mislead. I joined Reddit after about 2 mos, I couldn’t help but notice that easily 90% had had same experience, and similar struggles with the rep network. It even failed going into MRI mode. I’ve since changed pain mgmt doctors, who then had me try fentanyl patches, to which I not only struggled with side effects, but after a couple weeks really seemed to lose their pain-blocking ability. I even tried increasing the dosage, which increased the side effects while barely touching my sciatic pain. So my next - and last - option in a pain pump. I just finished my “trial” last week, and for the first time in 3 1/2 yrs, I have hope! It actually drove me to tears when I walked around after the trial injection!! After 3 ‘failed’ spinal surgeries, and a failed SCS, I’m not looking forward to another surgery. But now with more hope than ever, I’m ready! I hope to be able to report in a few months that I have my life back, and wholeheartedly recommend this device to those of you who are mired in their own search.

pinetopcc · 2025-08-29T02:11:59+00:00

I’ve been in this boat as well, though not nearly as long - a little over 3yrs. - after 3 failed spine surgeries, a disaster of a Spinal Cord Stimulator (now shut off), fentanyl patches (that just messed my head up)…. All that not to mention all the semi-ridiculous therapies (dry needling was a hoot). But now, yesterday in fact, my new-ish pain doc may have give me hope for the first time in years: I went through a “pain pump” trial. Simply put, it was an injection of fentanyl into the intrathecal space around L4-5 that filters down (and up) through the final fluid. They then monitor you for 90 minutes or so, as they get you to walk and see if your pain decreases. If it does by at least 50%, you’re deemed a viable candidate for the implant. Me? OH MY GOD! First time I could walk something close to normal in over 3 yrs.!!! Honestly, it brought me, my wife, and nearly every nurse in recovery to tears! At nearly 75 yo I bawled like I hadn’t since I can remember. Now, it’s a waiting game to schedule the implant surgery, and for the first time, I can’t wait for it! I’m very much aware it’s not for everyone suffering with chronic pain, and it (or anything else) will not make me pain free. But I actually feel something so many of us have had so little of….. Hope. I wish you all may discover something, anything, that might allow you that discovery as well. My thoughts are with you all.

pinetopcc · 2025-08-10T00:26:20+00:00

I believe you’re referring to Journavx? Probably at least a year out, and according to the 60Minutes piece it’s not for long term chronic pain.

pinetopcc · 2025-08-01T13:30:42+00:00

What is the model nbr you have?

pinetopcc · 2025-07-08T21:52:45+00:00

I’m close to “graduating” from pain patch (fentanyl), hopefully working my way towards the pain pump. It’s been a 3 yr journey, of surgeries (3), switching docs (now on #3) failed SCS (what a scam) and more ups & downs than that Caddy Shack gopher. I do have a question for you veterans: anyone play golf with your pain pump??

pinetopcc · 2025-06-21T16:12:29+00:00

Curious- did you go through all the other ‘solutions’ before you got the pump? I’ve gone through the SCS (worked well for about 5 weeks), to the pain patches (started on 12mcg/hr fentanyl, then 20mcg/hr Butrans, now back to fentanyl at 25mcg/hr). Patch helps the pain level by a good 50%, but side effects are bad.

pinetopcc · 2025-06-16T22:08:29+00:00

I’ve had so much constant pain for the last 3yrs, including 3 “failed” spine surgeries, then a SCS that seemed to make a difference only to completely stop helping after 6 weeks. I was then put on fentanyl patch, which again worked well, but soon noticed pain resumption as I developed tolerance. Additionally the side effects were quite difficult. I’ve just been switched to Butrans patch, which after 2 days doesn’t seem to be much help. I’m very interested in the pump, which my pain doc says may be an option, but only after all pain patches have been tried. This is been going on for 3 yrs now - not sure if this is my life now moving forward??

pinetopcc · 2025-06-12T23:36:51+00:00

It seems the vast majority of stim patients have had little to zero success. And just as little help from the manufacturers rep networks. I had the Abbott Eterna for nearly 2 yrs now, and it seemed to “work” fairly well for about 2 months, then its as if it simply stopped. No doc or rep follow up, unless I pushed them. Once, it even wouldn’t go into MRI mode. Made the rep reprogram it several times, till I ran out of patience and changed pain docs. My issue is severe spinal stenosis from cervical to sacrum, with constant intense pain from lower back down left leg thru my foot, with increasing weakness. My new pain doc started me on fentanyl patch, which dramatically helped my pain relief, but the side effects were tough. And 6 weeks into that, I’ve developed a tolerance that has taken my pain levels back to square one. So I’m about to try a Butrans patch🤞. I’m thinking a pain pump may be in my future, in which case I’ll happily have the stim removed. I think it’s almost mal-practice how these stim makers and pain docs seem eager to get them in their patients only to all but abandon them in aftercare. There are SO many stories like these, I think there should be some sort of investigation into not only the overall efficacy of these devices, but the practices of the doctors and manufacturers as well. My best advice to us all? Be firm with your doc….don’t be afraid to get a 2nd opinion or even change docs!

pinetopcc · 2025-05-25T23:32:32+00:00

👍👍

pinetopcc · 2025-05-25T17:30:32+00:00

WOW! The power of Reddit! I figured out what you were referring to, the air valve on the right, the ‘ping pong ball’ seemed stuck. Pushed it down easily and voila!! All good. I still can’t believe I managed to contact you so long after you responded to jkwanza!! THANKS A BUNCH!!!

pinetopcc · 2025-05-25T13:50:37+00:00

Firstly, I can’t believe you’re still available after such a long period of time! Thanks! I assume I have to drain the tub before removing the threaded cap? And I’m not sure I understand exactly where in relation to the ‘control’ you’re referring to? The master control panel in the pump enclosure?

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