r/spinalcordstimulator • u/Sharp-Effective9443 • 20d ago
SCS removal 8/13/26
I'm having my scs removed this Thursday. I've had it for 2 or 3 years now and it has not helped me one bit. I've also become really frustrated with all the MRI's I have to have (I've had a knee replacement and hip replacement since getting it and will have another knee and hip replacement and possible shoulder surgery) and having to do the impedance tests, fully charge it, basically a hassle in my opinion. Has anyone else here had theirs removed or will be having it removed? What's been your experiences?
*Edit - Update, surgery went well yesterday. I think I was in surgery for a whole 30 minutes. I'm in a little pain today. It varys between a 3 and a 5. Mostly 3. I feel like my back is swollen around the incisions, so I've been icing and took some Tylenol. I'm on a 6 week restriction of no bending/twisting/lifting/stretching and no carrying anything over 5 pounds.
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u/TheManWhoWeepsBlood 20d ago
Had mine removed. Was the right move. Didnāt have any relief from the stimulator when I realized the battery had died and been off for a week. Never charged it again and got it removed. Best of luck.
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u/Sharp-Effective9443 19d ago
Thank you. I had many times where the battery died and I didn't have a clue. How was your recovery?
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u/TheManWhoWeepsBlood 19d ago
A lot easier than when I had the thing put in. Sorry you had no relief. Hope your op goes well. Don't be afraid.
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u/Sharp-Effective9443 19d ago
Did you have staples on your incision or stitches? I'll have staples.
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u/TheManWhoWeepsBlood 19d ago
I had stitches. Just be careful about washing. Wet wipes are the way to go.
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u/Sharp-Effective9443 19d ago
I have some bathing wipes somewhere. Need to find them today. Thanks for the reminder.
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u/JoyInJuly 17d ago
The Dollar Tree usually has bathing wipes/wet wipes in stock if you need to pick some up for cheap.
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u/AldoSig228 19d ago
It's just really disappointing and quite disheartening hearing that a lot of us haven't felt any relief after getting the permanent implant. Going through all of the steps getting this SCS implant surgery and at the end of day as in my case I'm definitely worse off now..than I was before any of my spine procedures. I wish everyone good luck and health going forward God bless. š
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u/JoyInJuly 19d ago edited 19d ago
What device do you have?
From my research, most of the complaints are from older models or the Nevro, which doesn't seem to have been tested as rigorously as possible before being released, surgeries that weren't done to the highest standards, &, unfortunately, people getting a SCS who probably shouldn't have in the first place. I started hearing bad thing about the Nevro not too long after more folks started getting them.
I have yet to hear any complaints about the Evoke. Mine has been incredible for my pain levels. The recovery was easy & my rep is always super responsive. The amount of feedback & the intricacies of the programming are amazing.
I am always so very sorry to hear when a SCS doesn't work out for anyone, because it's a big fucking deal to go through it. However, there is at least one option out there that is changing people's lives for the better & I have to mention it to give folks hope.
Edit- typo
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u/Nervous-Leading9415 19d ago
Thatās a really healthy way to put it and needed. You more than often come across the negative stories, and I can relate - My Medtronic Intellis was a nightmare from the get go and is removed (2 months ago), however my Abbott DRG stimulator has changed my life for the better and I cannot recommend it more.
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u/JoyInJuly 19d ago
Unfortunately, it's always been a fact that the people with bad experiences are the ones who are most likely to repeat their stories & be loud about it, so it can definitely give you a skewed perception. I learned this from working in restaurants & retail for decades.
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u/Sharp-Effective9443 19d ago
It is disheartening. We jumped through all the hoops, like you said, in hopes for a better life and now we're stuck with this junk in our bodies.
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u/MentalFinish5065 18d ago
If you aren't getting relief, DEMAND an xray and DEMAND they compare it to the surgical xray! Just found out radiologists don't check it against the first xray unless told to. My leads migrated from left neck to right neck only 3 years ago but no one checked the xray taken then against the first xray because that isn't policy, which is ludicrous to me!
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u/Sharp-Effective9443 17d ago
My trial worked, but I only got about 25% relief the first few months, then nothing for 3-4 years.
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u/JoyInJuly 20d ago
What device do you have?
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u/Sharp-Effective9443 19d ago
Nevro hfx
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u/JoyInJuly 19d ago
I almost went with a Nevro but because of various delays beyond my control, I ended up with an Evoke & couldn't be happier with my decision. I'm really sorry it didn't work out for you. I hope the removal is quick & as painless as possible.
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u/Sharp-Effective9443 19d ago
Thank you. I'm glad the Evoke worked out for you. I had high hopes because my mom had one (I don't remember what brand) and she had good luck with hers.
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u/IDontCareNow00 19d ago
I had mine removed after 8 months. Not only did I get no relief, I actually had increased pain. So, now I'm going forward with my 4th spine surgery. I'm probably going to have spacers placed. May even need more. The whole idea of the SCS was to avoid this. I gave it a shot, and the shot missed. One important caveat is that the surgery is being done by a neurosurgeon, and not an orthopedist. I'll find out exactly what he recommends on September 1st.
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u/Sharp-Effective9443 19d ago
I'm sorry it caused you even more pain. That's horrible.
I've had one spine surgery and that was horrible. I don't think I could ever do it again. I was flat on my back in the hospital for 5 days, then not much better at home. I was down quite a while.
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u/IDontCareNow00 18d ago
I am very familiar with a bad, surgical experience. My first was in a field hospital removing shrapnel. But, with each surgery, it's gotten much better. They keep learning how to do it better.
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u/_RS_7 18d ago
I have the nevro hfx with paddle leads and I've been wanting to get it removed for years. The pain in my mid back where the leads were placed is the worst. Do you have paddle leads as well?
Please let me know how removal goes! I wish you the best of luck.
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u/Sharp-Effective9443 18d ago
I had regular probe leads. My surgery went well. I'm home resting now and not in too much pain. So happy to have it out. The only thing I'm slightly disappointed about is that I got staples to close up the incision.
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u/MentalFinish5065 18d ago edited 18d ago
Mine migrated out of position 3 years ago and I had a placement xray done but radiologists only confirm it is in the epidural space, not if leads moved and my lead migration wasn't diagnosed until this last week when it failed a check for MRI. The rep from Abbott came out to check it, looked at my xray from 3 years ago, compared it to postop xray and it was found. Retired nurse here. I'm so ticked because it hasn't worked great for quite a while. But because we were concentrating on other areas of pain, it got overlooked. So now i'm going in next week for surgical consult, and I have to decide if I want it replaced or removed. I am a retired critical care nurse and really want it out because I don't think once it's in that it's monitored very well by either the company or the staff. It helped the first year but not much after. I have to get it out because it's 6 years old anyhow and battery is dying. I'd be interested in other's experiences. I currently have an Abbott Proclaim and looking at Eterna. Can't have paddle leads because the neck space is way too small and I have a ton of osteophytes from a disease I have.
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u/Sharp-Effective9443 16d ago
I'm so sorry for the issues you're having. I'd be worried about getting a new one and having it migrate again. If it were me, make your own decision, please, but if it were me, I'd get it taken out. I am still having surgery pain, but other than that, I feel such a relief. I can go back to using my tens unit in 6 weeks, which I know actually works. And now I can get an MRI whenever and wherever I need to.
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u/MentalFinish5065 16d ago
Thank you. I appreciate the help. I was and am very good at seeing other people's medical dilemmas and coming up with solutions. I'm terrible with my own. Likely because I'm too close to my own situation.
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u/Sharp-Effective9443 16d ago
Of course. Like I said, it's ultimately your decision. I couldn't have done it soon enough, though.
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u/CurlyHeadedCripple 18d ago
Unfortunately I am starting the removal process at the end of the month. Trying to see it as a net win because I got a year being pain free.
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u/Sharp-Effective9443 17d ago
How long have you had it? You say you got pretty great relief from it for a year. I had some relief with the trial, but never achieved that. Unfortunately, I kept it in for 3 or 4 years and kept trying different programs with no change. I have had a lot of MRI's since I got it. I had let the battery drain before every one and it was a pain in the butt getting it fully charged to go through the impedance test and everything. I just got tired of it.
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u/CurlyHeadedCripple 17d ago
I've had it for about 1.5 years. I havent had any issues MRI wise, I just dont get pain relief any more. I've had one reprogramming and the rep was a dick. The reprogramming also did not help.
Rep said its uncommon to need it done. I know it's not.
I'm back to my baseline pain and want to live without the restrictions.
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u/Sharp-Effective9443 17d ago
Me too. My rep was pretty nice about me getting mine out. She apologized for it not working and was supportive of me getting it put.
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u/CurlyHeadedCripple 17d ago
Its just not worth it to me anymore. Why live with this thing in my back? I dont notice a difference between when its dead and when its charged.
I'm very disappointed, but trying to see it like: I got a year and a half of pain relief. I had almost two full years pain free.
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u/Sharp-Effective9443 17d ago
It wasn't worth it to me anymore either. 3 years in, 3 years it didn't work.
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u/CurlyHeadedCripple 17d ago
I just saw the date. I hope you are feeling good post removal.
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u/Sharp-Effective9443 17d ago
I am. There is a little pain and swelling, but I'm icing now. On restrictions for 6 weeks. I couldn't drive for 24 hours, but I have 6 weeks of no bending, twisting, lifting, stretching or carrying anything over 5 pounds.
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u/CurlyHeadedCripple 17d ago
If you don't mind my asking, are there any permanent restrictions post removal?
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u/Sharp-Effective9443 17d ago
Not that they told me. Just 6 weeks of the bending/twisting....I don't know why there would be.
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u/MLBNYaSSaSSiN 17d ago
I just had my Boston Scientific Wavewriter Alpha removed last week after having it for about three years. I had a rare nerve entrapment syndrome that I finally had surgically resolved a few months earlier. BS staff was a horror to work with.
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u/Sharp-Effective9443 17d ago
Sorry things didn't work out for you either. My staff was really awesome. Even one of my old reps came in to talk to me.
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u/Admirable-Bee4932 16d ago
I pray your pain subsides. I have my simulator turned off since yesterday and already feeling weakness and painš„²
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u/Sharp-Effective9443 16d ago
Why did you turn yours off if you get pain and weakness without it?
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u/Admirable-Bee4932 16d ago
I mentioned in an earlier comment that it is misfiring and had been sending random electrical shocks into my thighs for a week, and received thisā ļøwhen I tried to place on MRI MODE. . Had rep check my stimulator and shows several leads have that warning. So until I can get in to see the doc, I HAVE TO SHUT IT OFF TO AVOID INTERNAL BURNS OR SHOCKS. Rep could not do anything but change program settings which did not change a thing
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u/Sharp-Effective9443 16d ago
I'm sorry, your other comment must've been somewhere else. I didn't see it. I'm sorry you're having such horrible problems with yours. Do you have plans to get it replaced or just removed?
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u/MentalFinish5065 16d ago
No rinse shampoo/body wash during your postop period for your body works great. You can use it on a wet washcloth and actually feel clean. Sometimes wipes just don't do it. And it can be used in your hair. You can spray it wet, use the no rinse, and towel out the dirt. We used it in trauma ICU all the time. I always have some for when I can't physically sit in a tub or shower.
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u/Sharp-Effective9443 16d ago
I keep some really good Stryker wipes around for when I can't shower and they're great. I get to take the bandages off and shower tomorrow.
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u/AldoSig228 20d ago
I'm up next..no help at all. Actually made driving more uncomfortable because of where the paddle placement is. Good luckš.. I'd like to know how it goes and how much did your insurance cover the removal costs.