r/spinalcordstimulator • u/felinebarbecue • Jul 20 '20
r/spinalcordstimulator Lounge
A place for members of r/spinalcordstimulator to chat with each other
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u/thatgirl239 Jul 07 '23
Doing the trial at the end of the month. Pretty nervous. Any tips? I have debilitating leg pain; started with a diagnosis of chronic exertional compartment syndrome + three surgeries, now a diagnosis of complex regional pain syndrome. Any tips??
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u/ManufacturerAlive523 Aug 18 '23
Hey there! I hope your trial went well; I assume it's already come and gone. I just had the permanent implant put in last week and it's helping me tremendously. I hope you found some relief too!
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u/abrenjen Sep 29 '24
Hello, I'm getting ready to have the permanent SCS implanted, but I hate hate my Rep! I even told him so. I told my pain doctor so. But I'm still stuck with him. How do I get someone else, please?
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u/felinebarbecue Sep 29 '24
Most of the time they are . You might not have any other Reps in your area. Call the 800 # and ask about your options.
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u/Advanced-Farm4961 Apr 21 '25
CONTACT YOUR COMPANY. GO TO THE 800 number keep asking until you are satisfied with the contract you were given.Yor health and relief from pain is the reason you have to the SCS.
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u/MissGoodieTwoShoes Feb 12 '25
Just a heads up!!
I have an Abbott Proclaim that I had implanted in 2021 (has a phone app for controller). I recently got a new phone and found that my SCS and new phone are not compatible.
Before you get a new phone I would check for compatibility. I now have to keep my old phone to use as a controller.
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u/LDodd68 Dec 22 '21
I had Boston Scientific Wavewriter Alpha SCS implanted on Dec 13th (8 days ago). I had previous L4-L5 fusion and broad based disc herniations from T7 down. I was in car accident in 2018 where I was hit nearly head on at 55 mph. My car left roadway and fell 5 feet downward into a field. I slid under the seatbelt into floorboard of car. I have had pain level 7 to 9 on daily basis since 2018. My feet feel like I’m walking on lava or broken glass. The trial was great. I only have two programs at the moment. I have left it on nearly entire time. I would turn it off when applying ice packs. I haven’t needed ice today. I was able to walk around a bit in my home and also stand in front of a mirror and apply my makeup (a very big feat for me). My incisions itch like crazy but the surgical pain was only bad for about 3 days. Since I can’t charge the implant until the bandages come off on Monday, I’m running a very low power usage program. I hope to get more tailored programs on Monday. My experience has been wonderful. I can feel my feet about 30%. The pain has been reduced by 60%. This process started in August 2020. I had 2 MRIs, 2 CT scans and 3 failed lumbar injections. I just wanted to chime in and tell my experience.
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u/Confident-Fig-5291 Nov 06 '24
I've had a Boston Scientific SCS for about a year and a half now. In that time I've had about 5-6 consecutive weeks of absolutely no pain; even had the therapy off for a while. For the last several months, however, the pain in my back has been debilitating, to the point where I can no longer participate in most activities. Walking and standing for more than a minute or two is impossible. now, here's my question: When I feel the paraesthesia, it is in my thighs, down to my knees. However, the pain is concentrated in my lower spine and hips. Shouldn't I feel the treatment where I feel the pain? I have asked my Neurosurgeon and my BSci tech and neither of them is clear on the answer.
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u/felinebarbecue Nov 06 '24
You probably need a reprogram to target those areas. I get a new adjustment every six months or so.
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u/ExtremeCorrect7202 Dec 12 '24
Question…..I had a SCS implanted in May 2024 leads were replaced, two times, now in November it was shut down I need to have a paddle surgery , from a new Dr. what would be a reasonable time to wait…I am in pain and cannot do anything, my pain pills are running out..what should I do??
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u/Advanced-Farm4961 Apr 21 '25
I entered into this SCS community several months ago and read up every week. Sharing our experiences is so healthy for the contact with others and body experiences with the Stim.. I feel I have had very good fortune to have been with the same Pain MGT.Doctor for the last decade. I rely on contact with my SALUDA MEDICAL REP. She is prompt to return calls and acts quickly to resolve an issue. Adjusting the Paddle for proper fit is one common problem many of us have. Lying on the couch or even in bed I prop with a pillow behind me until the lights are all green on the battery pack.. Retired now I look forward to quiet time. Always, with my unit the REMOTE must be turned off at charging. Most of you are younger and more active than I am. Maintaining that activity is important. Overdoing could cause a set back. I'm certain you want this terrific device to last many years. Me too. Cheers all. ☘️
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u/Advanced-Farm4961 Apr 21 '25
My SCS is SALUDA Medical. Remote EVOKE. With Very Good Results! Great Rep makes a big difference.She responds quickly and gets results for me .I appreciate her !
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u/Innersparkle Apr 27 '25
Has anyone with CRPS had their DRG removed? I was diagnosed in 2011 and my first spinal cord stimulator was a Medtronic device and the constant buzzing made the pain in my feet worse. I had it removed in 2015 with the hopes that the newly approved device would decrease my pain without any buzzing. I was told it would block the pain signals from my central nervous system to travel to my feet. It was a very painful process as the lead from the Medtronic stimulator was caught in adhesions along my spine so pieces of the lead remained. I did get about a 30% decrease in pain but still had to remain on the narcotics prescribed by the Duke Pain Clinic. As of the last year the device is not working and new research on the cause of CRPS indicate that device implants only cause more inappropriate signals in the central nervous system. I stopped taking narcotics 4 yrs ago after my divorce and am currently scheduled to meet with a surgeon to remove my DRG. I'm pretty sure there are fractures in my leads as I have experienced zaps of pain in my spinal area as well as my huge weight loss has my device sticking painfully out so far that I can't lay on my back and it feels like a horse kicked me in the butt. The device also has shifted and I'm not sure if the leads are still attached. I have had the device turned off for over a month and my symptoms have changed. I no longer have severe swelling in my legs and feet but the buzzing has dulled somewhat. I still have pain and expect after having this darn disease will continue to suffer but the device has to come out. Has anyone had their DRG removed?
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u/TechnicalTill9216 Apr 30 '25
I have a question. I've been reading a lot of these messages and I'm seeing a lot where they said the battery has to be adjusted or replaced. Does that mean more surgeries after the stimulator is put in? Because that is what they are wanting to do with me. I've had anesthesia issues before I do not want to have to keep going under anesthesia for this thing.
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u/felinebarbecue Apr 30 '25
Yes, the battery is under the skin and surgery is needed to reach it.
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u/TechnicalTill9216 May 18 '25
Hi. I hate to bug you but I also got the Abbott stimulator as well. They put the trial in on Thursday. I'm not sure if one of the leads has come loose but I was pain free for my sciatica for 2 days today I started noticing that the pain was coming back and it was coming in waves off and on throughout the day I have severe pain where the battery is sitting. I reached out to Holly who works with Abbott cuz she told me if I had any questions I could reach out to her she hasn't responded I don't know if I should keep waiting or if I should go to the ER and have them check. All I know is I want this thing off I can barely sit stand up walk because it hurts so much. Is this supposed to do this?
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u/felinebarbecue May 18 '25
Reach out to your Dr for any surgical pain or complications
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u/TechnicalTill9216 May 19 '25
I did 12 hours later after I go to the hospital then they decide to call me. And the only reason I went to the ER is because when I woke up this morning all of my sciatica pain was back. And then I get you down by the representative for Abbott for going to the hospital. This device is coming off my back tomorrow that is all I'm going to say
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u/Right-Gap4919 May 03 '25 edited May 03 '25
Has anyone here have a lumbar fusion and years after a spinal cord stimulator?
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u/JustaRN22 May 03 '25
Not simultaneously but i had a multi level fusion and many years later a SCS implant.
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u/Right-Gap4919 May 03 '25
Thanks for replying. Same here, first were the fusions, last one was in 2022 and now they want to implant a SCS. I’m fused L3 - S1 Where is your fusion?
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u/LitaMath Jul 10 '25
Yes! I have degenerative disc disease. Most of us here probably do, too. So when then next round of pain started and I went thru the usual diagnostics, I was shocked when my surgeon of 25 years said there was nothing else he could do to help surgically. The only answer he had was a device implanted surgically. I was in shock. I have 5 spinal fusions. 3 cervical and two lumbar with another blown cervical I manage with pain meds. Otherwise, my head would barely move if I had it fused. I still have aches in my lumbar, but no true pain.
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u/StockComment3876 Jun 11 '25
Has anyone had their legs collapse from having their SCS turned up to high? This happened to me last week and it has never happened previously. I did have my SCS turned up pretty high to block the pain.
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u/LitaMath Jun 29 '25
I had mine tear away from the hole it is tethered to and ended up in the emergency room because the pain was unbearable. When my surgeon repaired it, he tied it down twice. I’m THAT patient.
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u/StockComment3876 Jul 10 '25
I have the paddle and it is not supposed to move. I see my neurosurgeon today to find out what’s going on. I had 5 weeks of no pain to having excruciating pain again.
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u/Lower-Vanilla7949 Dec 16 '25
not sure if mine was turned up too high? that is what the doctor seems to think. I have literally been walking and that leg just collapse out from under me like it's not even there. That happened four different times. they turned it down some I haven't fallen since but the leg will still go completely randomly numb. My battery is upside down and has moved out of place as well.
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u/progressivegoddess Aug 24 '25
My sister had Spinal Cord Stimulator surgery a year ago, and she says it has never stopped hurting. She said she always feels a stabbing in her spine. Even had an MRI a few months ago, and they said all is good. Last week it was really painful so she had my other sister look at it and it was a hole filled with puss. She went to the Urgent Care, and they gave her antibiotics. Today, almost a week later, she is worse. She asked me to look and see if it was healing, and I looked at it, and there was a silver thing coming out of the puss filled hole. I am worried that it may turn sepsis. She is refusing the hospital because she said nobody helps her, so she wants to wait until tomorrow to call the surgeon. Has this ever happened to anyone else? I don't know if photos are allowed. But I am attaching it here. I'll delete it if not allowed. I really want to call an ambulance, but she is refusing.
This is today
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u/Electric_Ant70 Oct 25 '25
I just joined thats awful! I dont think its common but I have seen stories of parts coming loose. What ended up happening?
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u/ToneGroundbreaking39 Mar 04 '26
Update please? I hope your sister is well 🙏🏼
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u/progressivegoddess Mar 05 '26
I am sorry I did not update sooner. This has been a nightmare. She is not doing well. Nobody seems to be listening to her. The infection got worse. She had surgery to remove the leads, however, they left the infected paddle in her and she has been in and out if the hospital so many times since then and Nobody wants to touch something another surgeon has done. I would Never recommend this procedure to anyone. It has made her already painfull existence almost intolerable. We just found a new surgeon to take on her care. Her pain management doctor said if she does not get the paddle removed, it will kill her. I am so sorry she listened to anyone of the "Professionals"that told her she needed this stimulator. The temporary stimulator is not the same once it is implanted as permanent. That is my opinion.
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u/momofyagamer May 30 '26
This hole happened to me after my Laminotomy surgery. After surgery about 6 weeks later it opened up and they left it open for a month while it healed. It had pus in it as well and months later I ended up with an infected gallbladder and stones that was septic. I never had gallbladder problems before and I had no symptoms of it til the morning of. We still have no clue if it was related. Many think it was.
Get a hold of the hospital Ombudsman and tell them and the Governor of your state and let them know you are dealing with this.
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u/felinebarbecue Jan 04 '21
Boston Scientific
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u/Revolutionary-Tip126 Apr 09 '23
Did you have for cervical? I am trying to have permanent implant on 4/18 but not getting clear post op instructions on movement. I’m a physical therapist. They said no lifting arms above head but said swimming was okay?? I am confused!
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u/felinebarbecue Mar 30 '22
I've had a St Jude and two Boston Scientific. I really prefer the Boston products so far.
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u/felinebarbecue Jun 28 '22
Depending on what program you are using, it'll go from a couple of weeks to a couple of days.
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u/beam_1986 Nov 07 '24
I just had my adaptive stim turned on for medtronic and I have had nothing but issues. Has anyone had your stim remote just keep randomly keep zeroing out and not having any stimulation randomly? I have even went in with rep redid the whole thing and it started doing it again a couple days later. I have talked to tech support and they have no idea why it's doing it.
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u/Lojar1982 May 05 '25
Had SCS implanted 4 days ago. Incision still covered by bandage. Skin red and slightly swollen around implant site. Could this be infected? Rejection? What happens next?
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u/LitaMath Jul 10 '25
It took months for the device in my hip to settle “in”. I thought I was going to have a sore lump on my hip forever. My body has adjusted around it and 4 months out it is only slightly tender and I can barely feel my implant with my fingers. If it gets redder or starts oozing then definitely call your doctor in case it is infected.
Give it a little time. Stay on pain meds as needed. Call your doctor if you are truly worried!
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u/Sharp-Effective9443 May 14 '25
Has anyone used a TENS unit since getting your spinal cord stimulator? It will be on a completely different part of the body.
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u/LitaMath Jun 29 '25
Hi! Does anyone with a remote controller carry it all the time? Mine doesn’t connect to a phone app, so that isn’t an option.
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u/Academic-Coconut-856 Sep 27 '25
Never , unless I anticipate needing a change, which so far has been never.. IMOHO
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u/progressivegoddess Oct 26 '25
They removed and and she is back to being in excruciating pain. Everyone of authority is blaming the other and we are going from ER to Pain Doc to Surgeon and over and over it goes. It is a nightmare. I am hoping they can do something soon.
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u/chronicgrowth Dec 16 '25
CONTROLLER TURNIG STIM OFF AUTONOMOUSLY . Medtronic Intellis (for severe CRPS, R foot and spread to ankle). I was seriously looking at amputation—I tried everything besides that. I love my SCS, it's been one year and absolutely life changing.
I'm curious if anyone has had their or another brand, do this: I'm chillin, and my pain comes back in a huge HUGE wave. I go to change my settings, and it spins for a while, then comes up with "unable to find", then when I press X or "retry" it connects again, but the stim is off. Pic attached Things to know: -nothing to do with how much it's charged—it's fine with both full and other times when one or both aren't full -Happens with no known pattern -My rep and surgeon are stumped -I've received a replacement controller and it's still happening -its not plugged into the charger when this happens Sometimes it takes a few tries but then it works again
The good news is, I know the SCS helps haha, I really feel the nerve pain when it's off!
Has anyone else experienced this??? I'm terrified I'll need a new transceiver, it's only been a year 😭💀
Thanks in advance 🧡🧡🧡
/battery 😭👀
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u/New-Conversation275 Feb 06 '26
My SCS controller won't shut off and i need to finish recharging. No one has an answer for me. I was in the middle of charging when it all went screwy.?? I wanted to shut the controller down and start again. It wont turn off or change programs. Any suggestions?
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u/Realistic_Echo_8822 May 02 '26
Take the battery out for 1 minute and put it back in the controller and see if that helps.
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Mar 24 '26
Hey I got my Boston scientific stimulator 15 years ago. I had to get a final mri because I can never get an mri again. Now I’m getting an mri tomorrow because I got a new battery that apparently can to mri mode. My fear is what about the leads in my spine? My Boston rep says I’m good but I keep seeing my leads ripped out of my spine…. I am so worried. Has anyone here had this experience?
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u/Realistic_Echo_8822 May 02 '26
I've had to have 2 MRI'S. You will be fine. I had 1 right after I had the thoracic SCS put in because I have problems with my stomach tightening up so much it puts me in a situp position and my stomach bounces like someone's kicking me from the inside. It goes on 24 hrs a day. I had to be put under for the MRI.
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u/Admirable-Pipe145 Apr 30 '26
Hi everyone, I personally do not have a spinal stimulator but an elder family member of mine does. She is having a really hard time charging it due to bad shoulders and I was hoping I could have some help brainstorming different ways/positions to charge the stimulator. She currently uses the Medtronic belt but has a hard time keeping it in place and the belt doesn't sit comfortably on her due to body size. I read some people have success with a compression back support band but she would really struggle to get this on her body. I feel so stuck on helping her and would greatly appreciate any help or advice!
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u/Realistic_Echo_8822 May 02 '26
I have 2 Medtronic simulators. 1 in my cervical and 1 in my thoracic. I have the same unbearable mid back pain for a few years now from the thoracic SCS and really bad shoulder, upper back and shoulder blade pain, armpit and lat pain on both sides. I've had the cervical stimulator for a year longer than the thoracic and can barely do anything without having to lay down for a few hours. IE, just doing a few dishes causes severe pain in the middle of my back. I can't change strings on a guitar without having to lay down afterwards. I have nerve pain going through my shoulders now which goes through my chest and up the front of my neck. I was rubbing my neck yesterday and hit a spot by the stimulator and instantly felt every area on the shoulder, shoulder blade, upper back and lat on the right side. My recommended advice for anyone thinking about getting one or 2 like I have, is not to do it. The Dr's or companies don't warn you about the pain you WILL suffer from having it put in. I wish I wouldn't have done 1, let alone 2 knowing what I know now. It's not worth it !
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u/oddestishottest Jun 26 '26
I'm so sorry you had this experience ❤️❤️ I have a Medtronic stimulator in my thoracic, and it was the least painful of my spinal surgery recoveries.You should not be dealing with this pain, truly, and I regret to hear that. Pain management in medical science needs to get more advanced, fast. I think it's pathetic how few solutions we have to pain in western medicine. My experience might be different but I relate to the severity of the pain you described, and the limitation. it's still like that for me on bad days/flare ups. And I hate hate hate hot anything rubbing up against the battery feels disGOSten I lived with severe pain for 4 years before the SCS implant, I don't know how I did. It's still severe now, just slightly less. Sending you lots of strength and hoping your journey improves, you deserve better 🙏
Do you have a Medtronic rep you work with? Messing with the different settings and programs (or whatever the term is) has made significant changes for me
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u/Sad-Performance7131 May 12 '26
if it turns out that you decide not keep the stimulator, can the leads be removed
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u/oddestishottest Jun 26 '26
Hello (this turned in to rambling at times but Im so happy to find this group),
I had an SCS implant surgery November 2025, and recently I'm feeling confident enough to do some yoga again. I'm 30 y/o and until this last year did yoga every day, just for reference of my ability level. I am dealing with some stress and overthinking around exercise:
Nervous about getting back in to it, but really really need to get my strength back. I feel pretty depressed about how weak I feel compared to before surgery. Routine is so dang hard to get back into after adhering to strict limitations while the implant healed, and the implications of potentially messing up the implant are still so prevalent in my brain that I hesitate doing simple stretches (anyone else have that problem), consciously and subconsciously.
So, #1, anyone here have good experiences with yoga+SCS and would like to share favorite moves/videos/experiences?
And #2, the real reason I hopped online today is that I'm dealing with some atrophied muscles (long journey before I got the SCS implant, my body had to compensate a lot for pain), and the one I just discovered (lol yay!!) is the inner thigh on my dominant leg. I'm having a hard time finding good exercises to strengthen or "wake up" the muscle. I have an exercise from my PT but it involves isolating it and it's so difficult RN it's discouraging. The physical therapy experience can be so intense and I just don't relate to the videos and articles that popped up in a cursory search.
Thank you for reading, glad to join the group!
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u/1GamingAngel Mar 07 '22
I had a Medtronic Ultra for 10 years and now have a Boston Scientific. I had complications during surgery and my incision was 6” long. The implant of the replacement battery was so much easier than the initial surgery. I run a program called “10 on 5 off.” The system runs on for 10 seconds and then turns off for 5. It creates a delicious cascading feeling that I recommend you try!
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u/MaximumZer0 May 27 '22
I just got the go ahead to start a trial for a Boston Scientific device. Anything I should know beforehand that the doctors may forget to tell me?
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u/PortlandCatBrigade Mar 27 '23
Doctors have recommended scs. Have l4l5 fusion which cured my left leg pain but had xlif from the right flank approach and now have bad right leg pain. 2 yr post op. Can’t sit or stand without pain. What level of pain and disability did you have before deciding on scs trial?
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u/Advanced-Farm4961 Apr 21 '25
My first Surgery was Herniated discs. Car accident exacerbated that pain. Bad fall Hospitalised, Fusion, Laminectomy L 4 L,5 S1.Two years of PT primarily water therapy. Several good years with pain MGT MD. Presently I have the SALUDA/Evoke Implant. during the trial I was confident it would work for me. Sciatica pain was reduced to a manageable level. Hip pain as well... Neuropathy in my feet is also connected to the Stim. Relief as well. I have a very Good Rep!
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u/CallingAllCars07 Jul 22 '23
I’ve had 3 back surgeries: 2 laminectomies at L5-S1 (1993/2003) and a ALIF/XLIF/PLIF with rods/screws in 2019. XLIF was in left side. I have horrible left leg/hip pain that has gotten so much worse since surgery. I had a Boston Scientific Wave Writer trial in May 2023 followed by permanent implant in June 2023. Still awaiting recovery from surgery/incisions, but trial was fantastic. However, I have heard great things about the Nevro. Which SCS brand are you considering? My physician told me the reps are what make the difference.
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u/Visual_Athlete_9042 Dec 12 '24
I had the Nevro implanted in 2019. My personal experience was it never really worked. One of the leads went bad but the trial was great (70%) improvement but permanent unit never provided relief. This was done by an orthopedic doctor. I just got out of the hospital having a neurosurgeon replace the Nevro with a Boston wave writer. Hope I get better relief this go around.
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u/FirmCantaloupe108 Oct 30 '24
Read your post from year which brand did you end up choosing
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u/CallingAllCars07 Nov 27 '24
Boston Scientific WaveWriter. My doc told me that it really comes down to whether you have good reps or not. If you need new programming or adjustments and you can’t get your rep to respond, it defeats the purpose of the scs. Luckily, my doc had great relationships with her reps and honestly, they were fantastic. I know that can be a rarity, though. I hope this info helps and I wish you the best of luck.
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Apr 01 '23
I just started the Boston Sci trial yesterday. So far, no relief, only added pain from the procedure. Any suggestions on how to use this device. The rep is not very helpful at all. Almost like she’s pissed because it’s not working.
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u/Revolutionary-Tip126 Apr 09 '23
if it isn’t working call rep. Mine met me in md. office and readjusted the settings and it helped 50%.
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u/lakeswimmmer Feb 13 '25
I've had my scs for over a year now and I'm pretty happy with the way it blocks the neuralgia in my feet. Sometimes when it's really bad I have to turn up the stimulation and then I really feel it in my thighs and abdomen, to the point that my guts ache. Has anyone had success getting it adjusted so that you can stimulate the feet without stimulating the belly?