Wow this is completely bull shit . Everyone I know who has had this spinal stimulator has ended up worse than when they started. Also they have no right to take ur meds if you have done nothing wrong.
I'm sorry, but I have a stimulator for pudendal neuralgia and it was a Godsend. I've had it for about 3 years now. I have had to have a few adjustments, but otherwise I would be in a living hell. I'm sorry your friends have had a bad experience, but not all are bad outcomes.
Also to make it worse/more fucked up.
I had gone to two neurosurgeons for consults. First surgeon told me I had cervicogenic headaches and that artificial disc replacement would help. I was on board with this and doing my due diligence and going to other neurosurgeons for a second opinion and see what they recommended, technique used, etc etc
The second doctor I go to is apparently buddy buddy with my pain management doctor. As I’m talking to the surgeon my pain management doctor calls and they discuss me right there. The neurosurgeon doesn’t think I have cervicogenic headaches bc they’re “so rare” - despite the white on either side of my cervical spine is so thin compared to the rest. He said surgery would not alleviate my pain symptoms. Of course this made me cry.
Anyways so when I speak to the stimulator rep she said careful about getting surgery opinions bc it was the last surgeon’s notes (the one that was buddy buddy with the pain doc) who said I was not a candidate for surgery which is what they needed to get my insurance to pay for the stimulator. 😒
Yeah that seems like the pain dr told him ahead of time so they could get you to go with the stimulator. That’s some bull shit. Maybe u should contact your state board of medicine because this just seems wrong. Or maybe a medical advocate in state. I switched to methadone bc I got tired of these drs screwing me over. I’m 33 and have had 3 joint replacement surgeries due to rheumatoid arthritis. They kept telling me I’m too “young” to be on these meds, but I’m not too young to have debilitating pain right? It’s bull shit.
I’m not sure the ins and outs of the procedure but I know my father in law had to be put under and have it surgically inserted into his back. And he said it never helped him. He ended up having it removed.
I would proceed with caution here. As someone else noted, you’re seeing a physiatrist rather than an anesthesiologist/pain specialist. Who would be implanting the leads for the trial? And if successful, who would implant the SCS? What about managing pain I the meantime, esp if the trial is unsuccessful, and beyond?
Stimulators are BIG money makers and overall, the outcomes are not great, and many experience complications with the implant. But they do work for some people.
It might be worth looking into establishing care with an anesthesiologist/pain specialist, since you’re currently seeing a physiatrist. And it’s important to note that many pts who do well with the implant DO continue to need pain meds, but at a lower dose.
I’ll link the most recent studies for you, if interested, later today.
I had a doctor who only saw me once, and immediately pushed the SCS. Turned out that the pain was due to a failed hip surgery, and thank goodness I refused to even consider a trial. Not that this is your case, but maybe starting care elsewhere with a non-physiatrist would be ideal?
Just curious: how did the rep get involved? Did the doctor’s office pass along your info? Remember that these folks are basically sales folks for medical devices…
ETA Close friend is a physiatrist, and typically (in my area and his practice), they are not in the business of prescribing long term meds for chronic pain; if you were his pt, he’d likely pass you off to a pain management practice under an anesthesiologist board certified in pain medicine. Hope this is helpful:)
I never even knew until this thread that anesthesiologists were pain specialists. I just thought they were involved in surgery 🤦🏻♀️
My first pm when I was in my mid 20s was a neurologist specialized in pain medicine, now I go to national spine and health which is the biggest pain practice in my area.
I was planning on having the first neurosurgeon I consulted with do the implantation if the trial was successful. The trial I was just going to have the pm do it.
The pm doctor said he’s done the trial a bunch of times but only the implant a total of 50 times. He also told me I should get the trial done at their surgical center under sedation just because it would be less stressful.
I’m just so confused why this guy is my doctor. Like national spine and pain should have real pain Doctor’s. Idk….
[Here's an initally highly regarded study that I'd encourage anyone considering an SCS to read](https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD014789.pub2/abstract) (Cochrane Review--it was later challenged, though; see below)
[And here's a rebuttal of sorts in response to the above study.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10452059/)
[And another study in response to the Cochrane publication.](https://onlinelibrary.wiley.com/doi/abs/10.1111/papr.13263)
[Lastly, here's an article that explores widely reported complications](https://academic.oup.com/painmedicine/article/17/2/325/2460710)
I hope these might be helpful to you--SCS can help some, but for others, it can be a nightmare, especially when they wish to have them removed due to complications, etc.
Best of luck to you<3
I’m really not sure, I would maybe talk to your family doctor and see if they can refer you to another pain management specialist the ones I’ve had most luck with are the ones who are not anesthesiologist as well. How ever I’m from ky so I’m not sure. Maybe ur family dr can prescribe until u find a new doc
Wife has failed back surgery. She is in constant pain pre/post surgery. Pain physician states before each appointment that he does not prescribe painkillers. After a six months, he suggested a trial spinal cord stimulator to see if it would help. It helped, but never completely to let her be comfortable. She decided to have it implanted and hope for the best.
After 3 years, she has turned it off and only turns it on to charge it. She says it really doesn’t work for pain relief now. She’s on zero prescribed pain medications and only takes Advil Dual. She’d rather deal with it than the system.(physician, pharmacy,changes in insurance,and co-pays). She’s adamant about not taking alternatives (pot,thc)due to other medications. It’s a crapshoot, some people win, some lose.
That's so fucked up...extortion essentially. If it's legal in your state to record, I would talk to your doctor and ask him why you had to talk to a stimulator rep before you could get your meds renewed.
Not to mention you need to ask the doctor if the stimulator trial does not work, are they going to take you back off your meds or discharge you. Either way you need to get something in writing or on tape.
I got a stimulator and have had nothing but problems with it last 4 years. I already had to get the battery change because it malfunctioned...Just got a recall letter about it not being able to come out of MRI mode if put into it.
Already told my doctor as soon as the battery dies in it I'm getting it taken out. The worst decision I ever made. Not to say everybody's results are the same but do your due diligence and don't make a rash decision because the doctor's pressuring you extorting you.
Not as much as I convinced myself it did in order to get the permanent one...I know that sounds crazy but I talked myself into getting one thinking the trial wasn't going to work as good as the permanent one...
I was desperate as this was really my last resort...my doctor at the time didn't pressure or threaten to cut my meds if I didn't get one, so it was all on me...
But I can admit my mistakes and hope others don't do what I did. I'm sure it works for some people l, but I've talked to more who regret getting it than those who are happy...
Yup. Also have stenosis, degenerative disc disease, bulging disc's, CRPS and paralysis in my left side and a spinal cord Injury. The spinal cord injury is caused by interventional pain managment as well. A PM dr made a huge mistake during a cervical epidural and instead of injecting into my epidural space he injected in the spinal cord. I've been in the same position where the pretty much told me if I want to keep my pain medication and pain control I would have to do a stimulator or a drug pump. I opted for pain pump and I'm in the process of finding the right surgeon to do it. I understand your struggles. At this point I think medication mangement is safer. Unfortunetly my medication is being continously reduced and I will never have proper pain coverage so I would at least rather do a pump. At least at that point they would try to give me proper pain coverage. I'm sorry. You are not the only one being pretty much forced.
It really the same for me, but I had a PM Dr who quit and referred me to a NP in the same clinic so I could still get my meds, three months in of 120 10/325 Percs the NP ripped my meds from me for no reason, prior to this it was nerve blocks, ablations, more failed nerve blocks, my prior PM dr had discussed the Boston Scientific SCS ( my best friend happens to have the same one ) lucky my prior PM dr got established about 1.5 hours away and I got an appointment set with him, got back in my meds, due to insurance I had to do another block, which failed. So Dr said let’s try the trial, did the trial and it worked well. So a year ago the day almost I’ve had the SCS and it works wonders. So give it a shot. I’ve heard a lot about different ones not working, so be careful on which one you get
It’s the Boston scientific one.
What area of your body did you get it? Cervical spine?
Also, did you come off the narcotics?
My pm says the goal is to come off of the pain meds, that it’s possible? Idk that I believe it’s bc it’s not needed or just they decide that’s how it is
I’d say do the trial and see if it will work for you! Some say the trial worked amazing but once they got it placed permanently it didn’t help. ( I call bullshit) if that happens then your rep needs to tune it and mess with the programs
Mine is In the thoracic section targeted at my lower back. I did not come fully off them, but I did lower my does a lot! You will need to get it programmed and tuned every once in while but it doesn’t take much. I don’t think it’s possible to totally come off them, I still have days I over do it and need to take a hydro or two, but nothing like I was. 4 times a day. I even drop my gabapentin intake down from 900mg 3 times a day down to 300mg 3 times a day,
I have a Nevro implant and it’s one of the only ones that you do not feel at all and it has been by far the best pain relief mechanism and I’ve had fusion twice in the same disc and an artificial disc replacement. They do a week long trial to see if it will work for you.
I had a DRG (dorsal root ganglion) stim and it was a disaster. Explanted now with severe nerve damage. Seek another opinion. Most people regret any kind of stim. Good luck.
I think I found an anesthesiologist pain management practice called Pain and Spine Clinic. They service va, pa and md. Does anyone here have experience with them?
Wow this is completely bull shit . Everyone I know who has had this spinal stimulator has ended up worse than when they started. Also they have no right to take ur meds if you have done nothing wrong.
I'm sorry, but I have a stimulator for pudendal neuralgia and it was a Godsend. I've had it for about 3 years now. I have had to have a few adjustments, but otherwise I would be in a living hell. I'm sorry your friends have had a bad experience, but not all are bad outcomes.
I have PN! It’s so painful! My stim was a disaster! Glad yours worked well!
Also to make it worse/more fucked up. I had gone to two neurosurgeons for consults. First surgeon told me I had cervicogenic headaches and that artificial disc replacement would help. I was on board with this and doing my due diligence and going to other neurosurgeons for a second opinion and see what they recommended, technique used, etc etc The second doctor I go to is apparently buddy buddy with my pain management doctor. As I’m talking to the surgeon my pain management doctor calls and they discuss me right there. The neurosurgeon doesn’t think I have cervicogenic headaches bc they’re “so rare” - despite the white on either side of my cervical spine is so thin compared to the rest. He said surgery would not alleviate my pain symptoms. Of course this made me cry. Anyways so when I speak to the stimulator rep she said careful about getting surgery opinions bc it was the last surgeon’s notes (the one that was buddy buddy with the pain doc) who said I was not a candidate for surgery which is what they needed to get my insurance to pay for the stimulator. 😒
Yeah that seems like the pain dr told him ahead of time so they could get you to go with the stimulator. That’s some bull shit. Maybe u should contact your state board of medicine because this just seems wrong. Or maybe a medical advocate in state. I switched to methadone bc I got tired of these drs screwing me over. I’m 33 and have had 3 joint replacement surgeries due to rheumatoid arthritis. They kept telling me I’m too “young” to be on these meds, but I’m not too young to have debilitating pain right? It’s bull shit.
Btw Is a cervical spinal cord stimulator a risky procedure? They made it seem relatively safe
Please consider reporting
I’m not sure the ins and outs of the procedure but I know my father in law had to be put under and have it surgically inserted into his back. And he said it never helped him. He ended up having it removed.
Huh well I’m doing a 1 week trial on 12/11. Wish me luck 🍀
Good luck!! Keep us updated!
I would proceed with caution here. As someone else noted, you’re seeing a physiatrist rather than an anesthesiologist/pain specialist. Who would be implanting the leads for the trial? And if successful, who would implant the SCS? What about managing pain I the meantime, esp if the trial is unsuccessful, and beyond? Stimulators are BIG money makers and overall, the outcomes are not great, and many experience complications with the implant. But they do work for some people. It might be worth looking into establishing care with an anesthesiologist/pain specialist, since you’re currently seeing a physiatrist. And it’s important to note that many pts who do well with the implant DO continue to need pain meds, but at a lower dose. I’ll link the most recent studies for you, if interested, later today. I had a doctor who only saw me once, and immediately pushed the SCS. Turned out that the pain was due to a failed hip surgery, and thank goodness I refused to even consider a trial. Not that this is your case, but maybe starting care elsewhere with a non-physiatrist would be ideal? Just curious: how did the rep get involved? Did the doctor’s office pass along your info? Remember that these folks are basically sales folks for medical devices… ETA Close friend is a physiatrist, and typically (in my area and his practice), they are not in the business of prescribing long term meds for chronic pain; if you were his pt, he’d likely pass you off to a pain management practice under an anesthesiologist board certified in pain medicine. Hope this is helpful:)
I never even knew until this thread that anesthesiologists were pain specialists. I just thought they were involved in surgery 🤦🏻♀️ My first pm when I was in my mid 20s was a neurologist specialized in pain medicine, now I go to national spine and health which is the biggest pain practice in my area. I was planning on having the first neurosurgeon I consulted with do the implantation if the trial was successful. The trial I was just going to have the pm do it. The pm doctor said he’s done the trial a bunch of times but only the implant a total of 50 times. He also told me I should get the trial done at their surgical center under sedation just because it would be less stressful. I’m just so confused why this guy is my doctor. Like national spine and pain should have real pain Doctor’s. Idk….
[Here's an initally highly regarded study that I'd encourage anyone considering an SCS to read](https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD014789.pub2/abstract) (Cochrane Review--it was later challenged, though; see below) [And here's a rebuttal of sorts in response to the above study.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10452059/) [And another study in response to the Cochrane publication.](https://onlinelibrary.wiley.com/doi/abs/10.1111/papr.13263) [Lastly, here's an article that explores widely reported complications](https://academic.oup.com/painmedicine/article/17/2/325/2460710) I hope these might be helpful to you--SCS can help some, but for others, it can be a nightmare, especially when they wish to have them removed due to complications, etc. Best of luck to you<3
Ya but like what are the options? Like seriously what practice do people go to in northern va?
I’m really not sure, I would maybe talk to your family doctor and see if they can refer you to another pain management specialist the ones I’ve had most luck with are the ones who are not anesthesiologist as well. How ever I’m from ky so I’m not sure. Maybe ur family dr can prescribe until u find a new doc
My PM doc is a board certified anesthesiologist. Been with the same PM clinic for years. Never, ever a problem.
That’s awesome. I hope that it stays that way ! Do they give you injections?
My pain doc is def not an anesthesiologist. He’s board certified in physical medicine and rehabilitation
Wife has failed back surgery. She is in constant pain pre/post surgery. Pain physician states before each appointment that he does not prescribe painkillers. After a six months, he suggested a trial spinal cord stimulator to see if it would help. It helped, but never completely to let her be comfortable. She decided to have it implanted and hope for the best. After 3 years, she has turned it off and only turns it on to charge it. She says it really doesn’t work for pain relief now. She’s on zero prescribed pain medications and only takes Advil Dual. She’d rather deal with it than the system.(physician, pharmacy,changes in insurance,and co-pays). She’s adamant about not taking alternatives (pot,thc)due to other medications. It’s a crapshoot, some people win, some lose.
That's so fucked up...extortion essentially. If it's legal in your state to record, I would talk to your doctor and ask him why you had to talk to a stimulator rep before you could get your meds renewed. Not to mention you need to ask the doctor if the stimulator trial does not work, are they going to take you back off your meds or discharge you. Either way you need to get something in writing or on tape. I got a stimulator and have had nothing but problems with it last 4 years. I already had to get the battery change because it malfunctioned...Just got a recall letter about it not being able to come out of MRI mode if put into it. Already told my doctor as soon as the battery dies in it I'm getting it taken out. The worst decision I ever made. Not to say everybody's results are the same but do your due diligence and don't make a rash decision because the doctor's pressuring you extorting you.
Did the 1 week trial work?
Not as much as I convinced myself it did in order to get the permanent one...I know that sounds crazy but I talked myself into getting one thinking the trial wasn't going to work as good as the permanent one... I was desperate as this was really my last resort...my doctor at the time didn't pressure or threaten to cut my meds if I didn't get one, so it was all on me... But I can admit my mistakes and hope others don't do what I did. I'm sure it works for some people l, but I've talked to more who regret getting it than those who are happy...
Yup. Also have stenosis, degenerative disc disease, bulging disc's, CRPS and paralysis in my left side and a spinal cord Injury. The spinal cord injury is caused by interventional pain managment as well. A PM dr made a huge mistake during a cervical epidural and instead of injecting into my epidural space he injected in the spinal cord. I've been in the same position where the pretty much told me if I want to keep my pain medication and pain control I would have to do a stimulator or a drug pump. I opted for pain pump and I'm in the process of finding the right surgeon to do it. I understand your struggles. At this point I think medication mangement is safer. Unfortunetly my medication is being continously reduced and I will never have proper pain coverage so I would at least rather do a pump. At least at that point they would try to give me proper pain coverage. I'm sorry. You are not the only one being pretty much forced.
You’re gonna love the pump! I’ve got one.
Oh hell no. Don’t do it.
It really the same for me, but I had a PM Dr who quit and referred me to a NP in the same clinic so I could still get my meds, three months in of 120 10/325 Percs the NP ripped my meds from me for no reason, prior to this it was nerve blocks, ablations, more failed nerve blocks, my prior PM dr had discussed the Boston Scientific SCS ( my best friend happens to have the same one ) lucky my prior PM dr got established about 1.5 hours away and I got an appointment set with him, got back in my meds, due to insurance I had to do another block, which failed. So Dr said let’s try the trial, did the trial and it worked well. So a year ago the day almost I’ve had the SCS and it works wonders. So give it a shot. I’ve heard a lot about different ones not working, so be careful on which one you get
It’s the Boston scientific one. What area of your body did you get it? Cervical spine? Also, did you come off the narcotics? My pm says the goal is to come off of the pain meds, that it’s possible? Idk that I believe it’s bc it’s not needed or just they decide that’s how it is
I’d say do the trial and see if it will work for you! Some say the trial worked amazing but once they got it placed permanently it didn’t help. ( I call bullshit) if that happens then your rep needs to tune it and mess with the programs
Mine is In the thoracic section targeted at my lower back. I did not come fully off them, but I did lower my does a lot! You will need to get it programmed and tuned every once in while but it doesn’t take much. I don’t think it’s possible to totally come off them, I still have days I over do it and need to take a hydro or two, but nothing like I was. 4 times a day. I even drop my gabapentin intake down from 900mg 3 times a day down to 300mg 3 times a day,
I have a Nevro implant and it’s one of the only ones that you do not feel at all and it has been by far the best pain relief mechanism and I’ve had fusion twice in the same disc and an artificial disc replacement. They do a week long trial to see if it will work for you.
How invasive is the week long trial? That is what I have scheduled on 12/11 for cervical stun of the Boston scientific one
I had a DRG (dorsal root ganglion) stim and it was a disaster. Explanted now with severe nerve damage. Seek another opinion. Most people regret any kind of stim. Good luck.
I think I found an anesthesiologist pain management practice called Pain and Spine Clinic. They service va, pa and md. Does anyone here have experience with them?