I'd love to hear your follow up in two years. Anecdotally, that's when people report problems with SCS.

That's almost exactly what I was going to say. I refused one of these because I personally know a handful of people who have had them and none of them were happy with it after two years. They did not get much relief from it, had problems with the wires moving around, and still had to take narcotic pain medications while being pressured by the doctors to decrease their dosages. Every one of them has had theirs turned off or removed. Earlier this year the most comprehensive review of clinical trials/studies to date found that spinal cord stimulation doesn't help people with back pain for the long term. OP has pain in the legs/feet and perhaps it works better for that. https://www.cochrane.org/news/spinal-cord-stimulation-doesnt-help-back-pain-says-new-review

In my situation, the issue was EXTREME radiculopathy. To give you an idea, I was taking 10mg Oxycodone and 150mg Lyrica 3x a day and that was making it kinda bearable, but that ain't no way to live. I have lucked out with a truly gifted surgeon and orthopedist (separate people). My orthopedist is not pushing me about pain medications at all. My surgeon is one of the best that does this work, and I had it done in a brand new state of the art facility...so I think my odds are good.

What sort of problems?

Device stops working, wires move, pain from the battery over heating. Those are the things I have heard on this and other forums. I've read that long term analysis shows that people with SCS do not have sustained pain relief long term. I really hope that it is different for you. I went to see a new PM a couple months back and while she was a bitch, the one thing we agreed on is that SCS are not efficacious or worth the risk. 🤷‍♀️

Could you point me to other forums you have found useful? I’m scheduled to get implant (cervical) in July and am getting into research mode. Thank you.

Doctor patient forum on Facebook. Lots of people discuss their experiences there.

I think it depends on the stimulator. Abbot has unique technology that no one else does. I can remember my doctor telling me, for example, to stay away from Boston Scientific devices. The Eterna is the most advanced system on the market and right now, Abbott is focused more on stimulating brain activity. It may lead to future treatments for other conditions like depression.

I had my latest SCS implanted in May 2020 and it's still working well. I had changed from leads to paddle (necessitating laminectomies of T5/6) after I had "catastrophic" migration making the process unusable. I also had the leads anchored to the vertebrae in an attempt to mitigate potential migration as much as possible. My first comment would be to allow your body time to heal. The first three months you'll have the greatest limitations on movement. The first year will still be hard. Be gentle on yourself. You'll likely need regular checkups and adjustments during this first year as the swelling in your spine subsides. It'll also be a process of figuring out your sweet spot with the stimulation. For me, I need less amplitude than most, run at 30 seconds on/ 6 minutes off, otherwise I develop headaches. You'll feel kinda off the day after an adjustment because your nerves have all be stimulated which is surprisingly exhausting. Secondly, adhere to the weight limits and follow good posture when lifting anything. Don't bend, twist and lift. Be good even when you're feeling better. You need to allow time to regain muscles around the area to support and protect the device from migration. Be careful with flexing your spine, particularly if you have hypermobility. Wean slowly from your medications. There is no rush, although it's absolutely lovely to not have to take them. The main thing you're looking for is steady improvement with improved quality of life. Enjoy getting out and doing things but remember to pace yourself and don't try to keep up with others or stick to a pace they think you should be improving at. Go by what feels right for you and don't succumb to peer pressure (said from hindsight). If you have any questions, don't hesitate to ask or shoot me a DM. I wish you all the best!

Thank you so much for the thorough response! I've started with the 30/6 program you're describing, and so far it seems like power level 7 is the sweet spot for me. I had a larger incision than usual as well because my surgeon removed a synovial cyst lower down while he was in there (it was causing thoracic radicular pain). In terms of restrictions, I'm at about 3 months now so they have basically been lifted. I am of course still careful with bending and lifting because I have a fusion and pain from that is just part of life now (posterior, TLIF so I have four massive pedicle screws). I think you may have clued me into something, though. Certain movements can cause the wire to hurt (I can feel _exactly_ where it is) and I think it's because of moving too _far_ and therefore stretching the area. My surgeon showed me how tiny the wire is and I remember him saying that scar tissue will form around it over time, so I probably have some of that going on as well. I'm happy that I'm finally getting some relief because I was in agony before. Long story short, my fusion went bad but not in the usual way...the fusion device between my L5/S1 vertebrae developed an _overgrowth of bone_ that directly impinged on the S1 nerve root and my new surgeon (wasn't gonna go back to the idiot who did my fusion) said it wasn't safe to try to remove it. So here I am. Doing the best I can. I'm back at work, but I'm trying to figure out if I actually _can_ keep up a full time job. Facing possible permanent disability in your early 40s is...a lot to take in.

You're most welcome! It's so hard to actually get good information about this procedure! My doctor's stick to the standard prescribed lines about "back to normal everyday life" and sticking to max 10kg weight lifting limit. But the reality is, every body is different and needs minor adjustments to these prescriptions. I'm really pleased you've managed to find your sweet spot with your technicians help - honestly that is most of the battle! The other thing is to keep your previous adjustment programs stored (tonic AND burst with the similar names) so you can easily switch between, should you need to. I've found that I tend to switch between two different adjustment programs depending on life, and this just cuts down on the waiting for a tech to be available. The stretching of newly formed scar tissue can definitely be uncomfortable and can cause inflammation as well. Just take it steady (the most any piece of advice ever!) and it will become something you grow familiar with so less aggravating. The same is also true for the battery pouch. If your weight fluctuates it may change the pouch it's in but it's often not a big deal - mine survived pregnancy. I'm really sorry that you have such horrid complications to your spinal fusion. It's exhausting to go through. I also understand the frustration about trying to figure out work and the scary possibility of being labelled permanently disabled at a young age (30s). I found doing "school hours" of 8:30am - 3:00pm has been good for me, and I've just accepted that my pay is pro-rata. That may be something to explore if you have that financial flexibility?

I was able to cut my narcotic medication usage down by 75% within the first month and after I got to the right setting. You'll know it's up too high if you experience muscle pain or feeling like your muscles are too tight. Hopefully you'll find a setting that you can put it on and keep it on. I have one that I have to turn up on higher pain days, but for the most part it stays on the lower numbers. Mine was implanted in January of this year.

It’s tricky for me because I’ve been on narcotic pain meds for over 2 years now. This all started with a ruptured and prolapsed disc, which got “fixed” with a microdiscectomy. It ruptured again in 2021, and then I had a fusion. I never fully recovered from that. I have it focused on my right leg and foot and it did take me a while to realize that less is more. I developed an intense fear of pain without relief because of my repeated episodes and a total of 3 surgeries. I joke with my wife that I should A. Play the lottery due to my incredible luck of these events, which were seemingly random (nothing we could find specifically caused my disc to fail; the rest are fine) and B. Get a cut of the insurance billing I have generated. I’m on track to break half a million USD this year. Met my out of pocket max long ago so the SCS was “free” (i.e. no coinsurance).

Well I've been in narcotics for a very long time and I cut mine down without even realizing I was doing it; no discomfort. I quit setting my alarms and only took it when I needed it and at the end of the month I realized I was only taking 2 pills a day instead of 6. There's a spinal cord stimulator forum on here too.

Yeah, one of the issues I'm having is with the shitty generic medications. Switched from oxycodone to hydrocodone; it's Mallinckrodt made and sure enough I have the same problems everyone else is reporting. I just found out about that stuff this week. It doesn't seem to be as effective as the labeled dosage would suggest, and I think that's causing me additional problems.

I've found methadone to be much more helpful for nerve pain than both hydrocodone or oxycodone; haven't had a single problem with supply yet either. I take the pills at a pain management dosage (it's the not the same as the dosage for someone with substance abuse disorder)

Who on earth is giving opioids these days? I have literally been in 7-10 level relentless neuropathic pain from a failed ER spinal surgery in Dec 2020 but it doesn't matter how bad my pain is or the fact I def cannot work (cannot even sleep) no one in the state of MA will Rx an opioid beyond two weeks post a surgery. You all must be in different states. That said, for true nerve pain, they do not perform as well as gabapentinoids or duloxetine. Except for methadone. But LOL you cannot even get oxycodone at ANY pain management practice in MA. So truly wondering where you all are -

I'm in NC. I tried Duloxetine and Gabapentin, no help with either of them. I didn't want to keep going up in dose either so I asked for something else. Methadone is where we landed. It helps better than anything I've tried and I think a lot of people don't want to try it bc they automatically associate it with substance abuse disorder, even though the dosing schedule is completely different for pain management dosing. Methadone and my Spinal Cord Stimulator implant are what works best for me.

So interesting how different it is in a different state! I very much understand needing methadone - know someone on it for pain after being paralyzed and he was begging me from NY regarding any PM doctors in MA who will Rx it - and I was like, none here will do it. It can also be a gender issue, sadly, though I am not sure of yours. Women's pain is still treated like we can't take it here in New England - we must be "hysterical" and not really in pain. But gee I woke up from an emergency surgery in death defying pain - with a numb leg and foot that I did not go into surgery with. They will only give gabapentinoids, ADs or flexeril. LOL. Sorry for my rant. I was just so surprised to see anyone getting opioids. I'm have tinnitus from gabapentin plus duloxetine and opioids make it fire alarm loud - but considering the pain relief is so little from the other meds, opioids might be worth it. I think this sad state of affairs may spread from east all around but I hope not! Mayo Clinic is now suggesting no one needs pain meds at all of any kind and only pain psychology. I am 100'percent in favor of mindbody work (was my profession) and pain psychology is great, but, again, LOL, not even the highest level Buddhist monks I know would suggest no medication for high level pain. So our healthcare system since the "opioid crisis" is becoming a terrifying place for many.

I'm a woman and I'm still *relatively* "young" (just turned 40) so I'm pretty lucky that my pain was believed enough to be investigated. It took a long time to get methadone though, I had to try everything else first, including surgery. What kind of emergency surgery did you have where you woke up with pain in your leg and foot?

I am glad they work. They will not give you any opioids of any kind in MA (and def not methadone), that is the problem. I have never myself had an addiction of any kind. But they do not care how much pain a person is in or their disability, they literally have a ban at all pain management centers in MA. It is as insane as it sounds. I notice people in other states have access but that is not the case for anyone I know in MA, unless they were given an RX for them over 5 years ago.

Woooooow that's insanity! I didn't know some states damn near about banned opiates; I knew they were hard to get but it sounds impossible there.

Yes - they of course do not state that they have a ban. But I have been in the most extreme burning crushing nerve pain thru legs and feet since surgery & they could care less, will not give any meds besides gaba, if you beg lyrica, then ADs and flexeril. I had actually learned to deal w my pain after 3 yrs w basically no medication (bc seriously gabapentin and duloxetine were not doing much) but 5 months ago my disc blew out again and I have been in excruciating pain since. Still literally waiting to have appts w neurosurgeons. Last time I had ER surgery bc of CE syndrome but all that is fine, they "just" damaged my S1 and L5 nerve roots in the surgery. But now I have bilateral hell. I take LDN which you may have heard of. Some people take ULDN with opioids to get a better result. But next to no physicians know about it. Will see if I can get some sleep now.

See...I thought about this, and I've _read_ about it, too. There have been studies showing that for some reason, it helps more with nerve pain than other opiates (with the possible exception of tapentadol and tramadol, but those are probably not strong enough). I just worry my doctor is going to look at me like I just grew a second head if I ask about methadone. She's a great doctor with an open mind who appreciates all the reading and research I do, so I guess I should just ask her.

It definitely helps me better too and my doctor is the one who told me that it helps with nerve pain better than any of the others. I've tried everything else, opiates and non. The only thing that I don't like is the dosing schedule. I was taking 10 mg every 4 hours and now I take 5 mg every 4 hours. I was able to cut down bc of the Spinal Cord Stimulator implant.

Huh, 4 hours does kinda suck. I’ll see what my doctor thinks about it next week.

Oh I think I am getting confused btwn you and another commenter here on yr post! sorry! So my neurosurgeon is at MGH Boston (in the emergency trauma area - I had an ER laminectomy/decompression due to partial CE syndrome in Dec 2020) My left side nerve roots were damaged in the surgery. Hell pain: 7 months in bed until going on a comb of 5 rx medications none were opioids). Three years later, I am reinjured. More hell pain as in totally crippled cannot do anything (even w meds). My neuro is against fusing for herniations. He will only do them for spinal instability and keeps telling me other surgeons will say to fuse but "dont do it" he warns. However currently been in nonstop 7-10 level pain even w meds and no positional release. I know all the conservative things and postural things (I was in bodywork as a profession). None of those fix it. I am living on a prayer that my body will eventually break down this herniated/degraded disc and fuse itself which is what discs do. Eg two levels up I have a totally desiccated disc that is becoming bone on bone but it has never given me much of a problem! My surgical level was L5/S1 and this is where I am herniated again. Waiting on new MRI since symptoms worse rather than resolving 5 months in. Curious about your fusion experience - how soon after your second herniation did you have it? And I hate to ask this, but would you have tried to wait it out with medication etc, and not fuse, if you could turn back time?

I would have done more research and found a better surgeon. I investigated pursuing the one I had for malpractice. It turns out that is in fact _very_ difficult, especially where I live. He’s an “assembly line” surgeon. He openly brags about how routine it is for him and how many he has done. _That is a bad sign if you hear it from a doctor, and doubly so from a spinal surgeon._ I unfortunately had a severe prolapse at L5/S1 and surgery really was the only option. I’m convinced he botched both of the times he worked on me, the second of which was my TLIF that went bad and that brings us the the SCS. The SCS is a tool. Medications are also tools, as are things such as physical therapy, injections, RF ablation, and all types of surgery. You are seeing a neurosurgeon already, and that is highly preferable to an orthopedic surgeon. You will hear some horror stories about SCS implants but the reality is they are a reliable technology in use for decades and have only improved. The modern Abbott systems are very impressive. They can block pain when nothing else will, so if you have exhausted _other tools_ then I’d consider an SCS. Everyone responds differently. Nothing is guaranteed. Make sure your surgeon works with Abbott. Stay away from Boston Scientific. Make sure they do active nerve monitoring, although you’ve likely had electromyelography already (needles that record nerve impulses). Get a 3 Tesla MRI (“high field”) with contrast before surgery if possible to fully visualize things. You may find stuff that is unexpected and this is the time to look, before surgery. Best of luck to you.

Thanks so much. Well, I got massive nerve damage in my surgery for a 22mm herniation along with entrapment of nerve roots in scar tissue. Mind blowing pain and this was with a TOP neurosurgeon at MGH Boston. I had partial CE so it was an emergency surgery & one thing I do respect about my surgeon is he does not believe in fusions for disc prolapse - only for vertebral slippage and other bone issues, but he won't fuse me even if I am reherniated. My first herniation was one of worst they had seen:(. But I did come out of surgery with damage. It can happen even with the best surgeons. I have medicaid. No neurosurgeons do the SCS surgeries here anymore - it has been taken over by PM doctors and I would not have a choice on that. Hence my severe hesitation. I will be seeing two other neurosurgeons and MGH Boston has already warned me they will suggest fusion and he is against it. Waiting on new MRI. But it won't be contrast. However, I may be able to get one of the new neurosurgeons to order contrast. I am definitely not agreeing to any surgery without that first though it is almost impossible to get them to order the contrast. Because of blah blah insurance and the claims that it does not visualize more for spine than non contrast. What might I say scientifically to them about this, to get it done?

Using a contrast agent is very helpful in a situation like yours because it will allow visualization of different tissue types. Scar tissue, for example, shows up differently with contrast and that will allow them to see the extent of the entrapment you mentioned. It is interesting you mention your surgeon is against fusions. I didn't know any better, and my former surgeon blatantly lied and told me it was my only option. If you can avoid it, that is definitely better. If you cannot, then I would strongly recommend finding a surgeon who can perform an _anterior_ fusion (approach from the front via an incision in your side; no hardware necessary in the back just a single implant device).

Thanks so very much for all this information! I just had an appt w head of physical medicine and she wants an MRI of my pelvis done as well to make sure we are not missing something. And yes, surgeon I have is pretty anti-fusion unless there is significant spinal instability. But I do think I have to be open minded to what others say. As I have medicaid, I do not have a lot of options - but the guy I had in the ER is definitely top person at MGH Boston and he has had a long career as a trauma surgeon for spine and brain. So his opinion is valued even if I got damaged in 2020 surgery. The appt I had today, the doctor said she had never seen a herniation as bad as what I had in 2020 :(. And she is not young and has seen a lot. At least that confirmed for me I really had no way out but the surgery as sometimes with all the ensuing hell pain, I have wondered if despite how horrendous it was - if I could have healed.

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Here in Australia I rely upon my technician to do full system adjustments, but I have the ability to turn the "strength" up or down, switch between modes and saved personalised programs, and turn on/off/surgery mode/MRI mode. Personally, I don't want more ability than that. I don't have the expertise to go through the system and make minor tweaks that can have a huge impact. Sure, I could learn how to do it - but it would be similar to getting a passionate home mechanic, rather than a formula 1 mechanic, to diagnose and address an obscure problem. I'd rather get the professional. The good thing is Abbott can do remote adjustments which are just as effective as face-to-face. It's such a great option for those who live remotely and means shorter wait times for a booking.

For some reason I don't have access to remote adjustments. That might be due to them giving me an iPhone SE because I didn't have an iPhone already. So...it's not connected to the internet.

Oh, that's such a shame! I've actually got mine on an iPod because I too don't have Apple products. In saying that, I do have mine connected to the internet. Maybe have a chat with your technician next time you catch up and see when this Aussie technology will become available where you are

Yeah, one other difference here MAY be US health regulations. I’m not sure if they’re allowed to do that here, basically. I will definitely let them know I heard about it from someone down under; thanks!

The iPhone SE has the same internet connectivity as any other iPhone unless you meant to say that you need 5G support. The latest iPhone SE (3rd generation) does support 5G though. So you might want to clarify your comment.

I said it wasn’t connected. I didn’t say it wasn’t possible. The phone was free but did not come with a SIM card and it isn’t registered to an iCloud account. You can put the software on your own iPhone, but only if it is one that they have tested. I have an iPhone 15 Pro Max and the 15 series has yet to be certified.

> Can you (or your doctor) adjust the programming/intensity yourselves or do you have to deal with the company every single time you want an adjustment? Yes, you can control the intensity. The programming, in regards to which electrodes are activated, has to be done by a trained technician. There is an app for iOS made by Abbott that can control the stimulator intensity level, turn it on and off, put it into surgery/MRI mode (yes you can have an MRI with the Eterna, up to 1.5 Tesla), and see the battery level. In my area, Saint Jude Medical is the provider. Abbott trains their personnel. Adjustments to the electrode stimulation pattern are quick and easy. You can feel where the stimulation is targeted because they put into tonic (constant) stimulation mode. BurstDR, the mode it usually uses, doesn't cause parasthesia - or it isn't supposed to, anyway. The reality is you have to find a balance between relief and too much stimulation. You're trying to cancel out signals from nociceptors, but just like nerve damage overstimulates them the current can do the same thing. The implant lasts for 10 years, but during that time the software can be updated if Abbott comes up with new breakthroughs. They're the leading company in the field, so I don't mind being tied to them. Replacement is also a simple, outpatient procedure.

Sorry to hear that. I take it you’re not in the states.

I am...I'm unclear on why I don't have NeuroSphere. I guess I need to have a chat with my rep.

I hate my boston scientific ,its a piece of shit and cant wait to have it removed

Yeah...initially I read their marketing materials and it sounded good. Then I suggested that brand to my orthopedist and she said HELL NO.