Is there a group here for spinal cord stimulator recipients?

This is probably the best place to post questions about spinal cord stimulation. There has historically been quite a bit of discussion about SCS in this group.

May I ask what weird sensations you have experienced with the Boston Scientific SCS?

I have Abbott Eterna, implanted 2/23, and after a successful trial in 12/22, the device is not delivering the relief I sought for lower left back pain. I have levoscoliosis and I feel the pain is bearing down on the L5-S1 pain, where I had a spinal fusion in 12/14. I see the neurosurgeon who performed the surgery late December for consultation. I have had it reprogramed 5-6 times.

First: the Boston Scientific SCS has helped immensely with my sciatic pain. I've had about 80% relief with it, if not more.
But increasingly I've felt weakness in my legs, both lower and upper legs. Seems that this happens when I have the battery at full strength, although that may be my imagination. It occurs to me that the SCS is an electrical device running along the spinal nerves so of course it interferes with all nerves. But there have been times when my legs are greatly weakened, making it hard to walk or bear weight on my legs.
Has anyone else experienced this?

@vikkitennis after a year and a half of torture from an L4-S1 Fusion and 4 surgeons plus 2 at Mayo I have a loose screw at L5 they have recommended it be left alone and do a stimulator. The surgeon is trying to get it in before the end of the year. Is there any details you can share about location , other symptoms you’ve had, complications, regrets or loves about it, anything to look out for during trial to specifically tell the doctor, any suggestions besides stay away from everyone( I was twisted while sitting by a friend 3 weeks after my surgery) Thank you in Advance for anything you have to offer a now disabled 52 year old because of it. Only reason I had surgery when bending over I would about fall at times , when the surgeon got in there L5 was loose. I was fused at L3-L4 in 2002

@moish - I have heard device reps say that if your legs feel "heavy" you probably have your stimulation strength set too high. I wonder if this is what you might be describing.

interesting diagnosis about the screw loose at L5. The physico-doctor I saw at Mayo also recommended that to me as well, but I am going through the avenues first, before they take on that task.
First, I had the newer Abbott SCS a larger, non-programable unit, but it protruded out from the lower spine. I am 5'7" and 116; when a person comes up to you and asks what this is sticking out from your back, it is time to find another unit.
The trial was I felt good, however, no shower for five days, as the battery is outside the spine. You are able to adjust it yourself, but be aware, it can be powerful; once the unit is implanted in the spine, you can only adjust it up a few degrees.
During the trial, the rep contacts you daily, and asks how it is. After the surgery, then you contact the rep if you need more stimulation or less. Sometimes the rep doesn't reply to you in a timely manner. I contact the neurosurgeon who performed the surgery, and he is on it like glue, contacts the rep(s) and someone calls me within an hour.
It is worth a try, and I am pleased I did so. As I mentioned, the curvature in my spine is not helping. I knew about the simulators some time ago, but it took four years for me to say I am ready to do so. I also contacted a neurosurgeon from Mayo, but he wanted to insert the lead wires, not the paddles, because "they are easier" (?) the paddles is what you want inserted for better pain relief-control. I interviewed three neuro's and chose the one who has done 100's of them. Talk to your rep, and ask their recommendation.
Right now, the SCS is not on, and not programmed. I charge it every five weeks, about 1-2 hours per day. I have had an extremely busy 6 weeks with travel, daughter's marriage, and organized a tennis tournament, followed by Thanksgiving. I don't believe the device is for me, with my schedule and the spine curvature.
Research it, and go from there.

That seems to be a common complaint for these SCS's. My trial of the Medtronic unit gave me about 80% pain reduction. The permanent implant gave about 50% pain mitigation. It was still enough to make life more bearable. Until it just stopped working.

@vikkitennis Thanks for tips maybe they will not only help me but others. The orthopedic surgeon at Mayo in Rochester found my loose screw. I haven’t heard about the paddles so now I have something to look into. Sorry the stimulators not working for you! So should I try the trial at my max so that they can do better with permanent one or is it just where permanent are placed ?

your last sentence, I am trying to follow you...

The trial is a must, and it is programmed after the battery is placed on the exterior of the body. You can dial it up higher or lower during the trial, and I brought it up higher, but that was my mistake, as I woke up during the night "buzzing".
The rep's contact you daily, or at your service during the trial.
After the real SCS is implanted, I heard from other patients, their rep "ghosts them" and they don't hear from them again. Have a good relationship with your neurosurgeon, and as I said, if they do not contact you, contact the neurosurgeon and they don't want to hear it from the neurosurgeon, of why they are not in contact with the patient.
This is big business, and the two doctors I declined to have their performance, called me and asked me why I didn't elect to choose them (??) That to me is most unethical, and I was taken back when they did question me.
The SCS permanent placement is up to you and the surgeon. The second one inserted rides up higher than the first one.
Please keep all of us with the forum, updated with you and the process.

@moish and others following this discussion, there a quite a few discussions and posts in the Spine Health Support Group on spinal cord stimulators in case you haven't seen them. Here's a few of the different brand discussions:

-- What's your experience: Boston Scientific Spinal Cord Simulator?
https://connect.mayoclinic.org/discussion/boston-scientific-spinal-cord-simulator/
-- Comparison of Spinal Cord Stimulators from Boston Sci., Nevro: https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/
-- Has anyone had an Abbott spinal cord stimulator put in there back?
https://connect.mayoclinic.org/discussion/has-anyone-had-an-abbott-spinal-cord-stimulator-put-in-there-back-has/
If you want to scan through the list of related discussions on spinal cord stimulators, here is a link for the search results - https://connect.mayoclinic.org/search/discussions/?search=spinal%20cord%20stimulator&pg=2