Thinking about stimulator or pain pump for chronic lumbar pain

@mattman1022 Pain is a silent disease. It steals our life, our joy. I had a SCS implanted in 2018. It helped quite a bit with my pain along with meds. It just stopped working in 2021. In 2023 I had a pain pump implanted after a successful trial. So far I have not gotten any real relief form it. I'm still(yes, after two years) having it adjusted. I'm hoping to have the output increased to a level that will help. I wish you well in your search.

@mattman1022 Sorry, I didn't discuss the pain. The trials are minimally invasive. Can be done in the Doc's office. My pain pump trial was an injection of Hydromorphone. Dropped my pain from about a 7 down to a 2. The implant surgery was not too bad. A week or so recovery. SCS trial involved wearing a temporary unit on your back fo 3-5 days. Based on how your pain is affected, you can decide whether to get the permanent implant.

The meds in a pain pump don’t need to cross the blood brain barrier as they are placed directly into the central nervous system.

I had a Medtronic pain pump and developed arachnoiditis because of it. This is a terrible disease causing inflammation of the thin lining around the spinal cord. The pain is much worse than the pain that led me to the pump and I can’t sit for more than 20 minutes. There is no treatment and little research is ongoing. It is progressive with advanced cases confined to wheelchair and in agony. It’s been 5 years and I have yet to find a doctor with any experience.

It is a rare complication, but becoming less so as spinal procedures become more common. Had I known, I never would have had one placed.

And by the way, when the pump was removed, went through 3 weeks of terrible opioid withdrawal.

I would discuss this complication with your doc. They didn’t even list it on my authorization sheet

@laura1970
I had a pain pump for 20 years. Had to have it removed. I too, have adhesive arachnoiditis, most likely from the pump and irritating effects from the meds. I got my PCP to prescribe Indomethacin. It is the only thing that helps my arachnoiditis. If I had to do it all over again, I would not have a pump or the stimulator implanted.

@carolynhughes75 it really sucks that most people who get a pump, or any spinal surgery are not alerted to this possible complication. I have read that up to 30% of failed back surgeries are due to arachnoiditis

If you have spasticity from the fusion (as I do), you could consider Botox. It is injected into muscle, not the spinal canal, and wears off in 3 months, so less risk. I have heard of patients getting lidocaine injections as a trial first (if lidocaine works then in theory Botox should as well).

@laura1970
The only lower back surgery I have had, was the pain pump.
So it stands to reason that my arachnoiditis is related to my pump.

I had a spinal fusion L4/5, unfortunately a piece of bone was chipped during the surgery and lodged in my L5 nerve. 7 years later after many pain injections and constant medication (I still take), I have just tried a Neural pain Stimulator implant. The trial went well and had a 60% reduction of pain. I have had the full implant done, but still not getting the same results as the trial. One thing the doctors cant really convey correctly is how intrusive the implanted battery is. It is near to your spine, about 2inches by 1 1/2 in wide, so you really do feel it while sleeping. I for some reason cannot sleep on my sides (definitely not the left one since bad operation), and now the right as well, so its back sleeping for me, I still wake from pain from laying on the battery too long, plus the site where the lead is anchored into your spine area. So while I am hopeful for better results, just wish I had been told about how BIG the battery was going to be. I am told by doctor its because I am on the leaner side build! Also not getting off meds, which is Lyrica and Methodone, so I know all about addiction! If I miss those meds by 3-4 hours I start getting withdrawal! My advice, is keep looking and trying new ideas for pain relief, BUT ask a LOT of questions!

@carolynhughes75 I agree

@jacque45 feel for you. I had a SCS. It was removed due complications but in part due the excruciating pain from the battery pack. Like you i was deeply upset Drs werent honest about the pain that the battery pack can cause. My pain got so bad I had to go on a liquid diet for 3 months, battery pack caused so much abdominal pain, eating was unbearable.
10 days ago my new surgical team agreed I had been given SCS erroneously/ incorrect diagnosis. I tolerated one year of complete and total torture with this device and was bed ridden for 8 months due the complications.
I find it shameful that Drs hype up benefits of these devices but fail to issue warnings. YES ask questions but at the end of the day, if your Dr is less than honest, its a poor outcome. I have a painful thick 'wod' of scar tissue from battery pack. As patients we put FAR too much trust in Drs. Everytime i followed their advice against my gut it did NOT end well. BE PRO-ACTIVE / BE WARY / RESEARCH THOROUGHLY ❤️