Should I have the Spinal Cord Stimulator? Looking for reviews on this

Posted by denman55 @denman55, Jun 5, 2023

I have had chronic lower back pain due to lumbar spinal stenosis for over 10-years. I have had multiple therapies and procedures done - including RFA, Epidural steroid injections, a MILD procedure, acupuncture, OT/PT and Chiropractics, as well as an Interspinous spacer and nothing has helped my pain. After all of that, the physician I saw in March's only recommendation was for me to have the Spinal cord stimulator, but I am actually afraid of this and have read that there have been numerous injuries as a result of this implant, and after reviewing the booklet and watching the video I initially felt that it was just to restrictive in terms of how you could move your body. If you have had this procedure please let me know your results. Many thanks.

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@ga29

Thank you for sharing your experiences. I am currently weighing my options as well for pain relief in my spine, including another fusion surgery, which may or may not reduce my pain!
I am taking oral pain meds, have for many years, but its effectiveness is is not as good as it was.
I’m considering getting a pain pump, my current doctor says they are not recommending those anymore. Not sure that’s true?
Also considering the SCS, but like denman55 I’m afraid of the possible damage it may cause to my back. Any thoughts are appreciated!

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Oral pain meds and/or Narcotic pain medications are not available in NJ. A pain pump is normally only for cancer patients with intractable pain, especially if Morphine or another narcotic is used. The only option for pain relief presented to me was the Spinal Cord Stimulator for my lumbar spinal stenosis pain that has not responded to alternative treatments and therapies.

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@denman55

Oral pain meds and/or Narcotic pain medications are not available in NJ. A pain pump is normally only for cancer patients with intractable pain, especially if Morphine or another narcotic is used. The only option for pain relief presented to me was the Spinal Cord Stimulator for my lumbar spinal stenosis pain that has not responded to alternative treatments and therapies.

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I hope others will comment on their experience with SCS.
I’m sorry for your dilemma, and wish you the best! I’m glad I don’t live in NJ, not in favor of government regulation that interferes with the doctor-patient relationships to that degree. There’s not a one size fits all approach to medical treatment.

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Been suffering L4 radicular pain for 35 yrs, after a laminectomy for a disc rupture that wrapped fragments on the nerve. A transforaminal injection to the dorsal root ganglia helps for approx 90days along with many meds over the yrs but now best is 900 gabapentin and 50mg nortriptyline, sometimes add a Celebrex .. After reading up on Medtronic, Nervo and Boston Scientific devises and the number of complaints and issues I am not going forward even with a test. The dr was honest that 2 patients have worse pain from scar tissue forming.. I have scar tissue already.wrapped around my L5 DRG that is inoperable as it could paralyze me. The procedure to implant the permanent device sounds like it would cause me horrible scarring consequences and the lead or paddle placement had many issues too. I fear heart rhythm consequences along with the multitude of problems. These devises have some of the hugest number of complaints registered at MAUDE, which is the FDA tracking for device problems. There is only 1 MRI place here among dozens that will even consider an MRI with the BS unit. So no, my answer is no. Dont traumatize me and make me worse. In years I have only read a small handful of happy people with SCS and so many more have them pulled out. Just my take....

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@jm1

Been suffering L4 radicular pain for 35 yrs, after a laminectomy for a disc rupture that wrapped fragments on the nerve. A transforaminal injection to the dorsal root ganglia helps for approx 90days along with many meds over the yrs but now best is 900 gabapentin and 50mg nortriptyline, sometimes add a Celebrex .. After reading up on Medtronic, Nervo and Boston Scientific devises and the number of complaints and issues I am not going forward even with a test. The dr was honest that 2 patients have worse pain from scar tissue forming.. I have scar tissue already.wrapped around my L5 DRG that is inoperable as it could paralyze me. The procedure to implant the permanent device sounds like it would cause me horrible scarring consequences and the lead or paddle placement had many issues too. I fear heart rhythm consequences along with the multitude of problems. These devises have some of the hugest number of complaints registered at MAUDE, which is the FDA tracking for device problems. There is only 1 MRI place here among dozens that will even consider an MRI with the BS unit. So no, my answer is no. Dont traumatize me and make me worse. In years I have only read a small handful of happy people with SCS and so many more have them pulled out. Just my take....

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That is certainly cause for concern. My take on this is that I have had 3 Pain Management Physicians recommend the SCS to me. Initially, I said no. But now my pain levels have become much worse, and I do not have any meds to assist with the pain, so I have scheduled an appt. with the physician I saw last to go for the trial. At this point it is my only option. I've been suffering with this pain for well over 10-years, and now it has advanced into my legs, which may indicate I have neurogenic claudication, and with that I can barely walk due to the leg pain. I'm crossing my fingers and saying a prayer that perhaps this may help to reduce this horrible pain.

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My trial went great and I can't wait for the permanent one. I have chronic L5 nerve damage. I went to an outpatient clinic for it to be placed and the removal was in the doctor's office. It was easier than some IV's I've had removed. I have learned that 3 of my friends have them, one for over a decade - what are the odds of that.

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@alexis7

My trial went great and I can't wait for the permanent one. I have chronic L5 nerve damage. I went to an outpatient clinic for it to be placed and the removal was in the doctor's office. It was easier than some IV's I've had removed. I have learned that 3 of my friends have them, one for over a decade - what are the odds of that.

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Hi @alexis7
Still keeping tabs on you as you go through your procedure. Please keep us posted on how you make out.

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Here's my perception of SCSs. I have had chronic back and leg pain for 20 years. I've had 5 spine surgeries. Most of the common procedures, like injections and ablations. Drs. have recommended I try a SCS because nothing else has worked very well for me. Strong pain killers work for me, but that's not your question.

So, I've read a lot about SCSs and talked with a few people who have them. People who have them have told me, they get varying levels of relief, but they all still take pain medicine. I have read accounts of people who get tremendous, almost total relief, and have stopped taking pain meds. But I didn't meet any of those people.

The SCS manufacturers tell you they consider more than 50% pain relief to be success. It is my impression that a lot of people (maybe 70%) get 50% or more relief. I expect a much smaller percentage (maybe 30%) get more than 90% relief and stop taking pain medicine.

Of the 30% who don't get 50% relief, i feel there are a number of reasons things don't go well for them. Some are technical product defects like the battery packs are defective, or the electrode leads are defective. Some are procedural, like the surgeon doesn't find optimal locations for the leads, or the leads move after the surgery, or they break.

Then there are problems like my sister had during her SCS implant operation, where the surgeon made a mistake that created some nerve damage that will prevent her from ever walking again.

If you choose to proceed, I hope you are one of the 30% who get 80%-100% relief and can totally ditch you pain pills. For now, I'm not getting SCS.

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@jthomas458

Here's my perception of SCSs. I have had chronic back and leg pain for 20 years. I've had 5 spine surgeries. Most of the common procedures, like injections and ablations. Drs. have recommended I try a SCS because nothing else has worked very well for me. Strong pain killers work for me, but that's not your question.

So, I've read a lot about SCSs and talked with a few people who have them. People who have them have told me, they get varying levels of relief, but they all still take pain medicine. I have read accounts of people who get tremendous, almost total relief, and have stopped taking pain meds. But I didn't meet any of those people.

The SCS manufacturers tell you they consider more than 50% pain relief to be success. It is my impression that a lot of people (maybe 70%) get 50% or more relief. I expect a much smaller percentage (maybe 30%) get more than 90% relief and stop taking pain medicine.

Of the 30% who don't get 50% relief, i feel there are a number of reasons things don't go well for them. Some are technical product defects like the battery packs are defective, or the electrode leads are defective. Some are procedural, like the surgeon doesn't find optimal locations for the leads, or the leads move after the surgery, or they break.

Then there are problems like my sister had during her SCS implant operation, where the surgeon made a mistake that created some nerve damage that will prevent her from ever walking again.

If you choose to proceed, I hope you are one of the 30% who get 80%-100% relief and can totally ditch you pain pills. For now, I'm not getting SCS.

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You're not getting the SCS because you have pain medication. I do not have pain medication and it is not available or prescribed in my area, or my state, so the SCS is my only option to get some sort of pain relief from this pain that I have suffered for well over 10-years. I initially refused to have the SCS - three times, when offered by Pain Management Physicians. I'm an RN, I've done all the research, the reading, watched the video and read the booklet. And I made the decision that No, I was not getting this SCS. But ...after spending months having PT, acupuncture, Chiropractics, having Epidural Steroid Injections, an Interspinous spacer, and a MILD procedure only to find that nothing worked for me in reducing my pain......I have no other option available to me to at least do the trial of the SCS. It does actually scare the heck out of me, because I've read all the horror stories out there.......but maybe I need to look for some success stories too.

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@jthomas458

Here's my perception of SCSs. I have had chronic back and leg pain for 20 years. I've had 5 spine surgeries. Most of the common procedures, like injections and ablations. Drs. have recommended I try a SCS because nothing else has worked very well for me. Strong pain killers work for me, but that's not your question.

So, I've read a lot about SCSs and talked with a few people who have them. People who have them have told me, they get varying levels of relief, but they all still take pain medicine. I have read accounts of people who get tremendous, almost total relief, and have stopped taking pain meds. But I didn't meet any of those people.

The SCS manufacturers tell you they consider more than 50% pain relief to be success. It is my impression that a lot of people (maybe 70%) get 50% or more relief. I expect a much smaller percentage (maybe 30%) get more than 90% relief and stop taking pain medicine.

Of the 30% who don't get 50% relief, i feel there are a number of reasons things don't go well for them. Some are technical product defects like the battery packs are defective, or the electrode leads are defective. Some are procedural, like the surgeon doesn't find optimal locations for the leads, or the leads move after the surgery, or they break.

Then there are problems like my sister had during her SCS implant operation, where the surgeon made a mistake that created some nerve damage that will prevent her from ever walking again.

If you choose to proceed, I hope you are one of the 30% who get 80%-100% relief and can totally ditch you pain pills. For now, I'm not getting SCS.

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It is the trial that requires 50% pain relief or you won't qualify for permanent placement. I got 50% and sometimes more pain relief during my trail. I think that is where you got the 50% relief from, the required trial minimum. I have been told the permanent works even better. I was also told I should be able to quit pain pills and the 1800 mg of Gabapentin I take. I was told by 3 neurosurgeons they couldn't help me but at least the third one recommended I try the SCS. I ran out of options and the pain is ruining my life. I am grateful for modern medicine and the chance to get part of it back. I too am a retired RN and have done my research. Also my three friends are very happy with theirs.
If you read drug inserts, you may never take another prescription medication. If you read a surgery consent, you may never have another surgery. I could go on but you get the point. People think Boston Scientific is a bad SCS because of a law suit, if they read further they'd learn it was over a design patent and another over a vena cava filter, not their SCS.

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@alexis7

It is the trial that requires 50% pain relief or you won't qualify for permanent placement. I got 50% and sometimes more pain relief during my trail. I think that is where you got the 50% relief from, the required trial minimum. I have been told the permanent works even better. I was also told I should be able to quit pain pills and the 1800 mg of Gabapentin I take. I was told by 3 neurosurgeons they couldn't help me but at least the third one recommended I try the SCS. I ran out of options and the pain is ruining my life. I am grateful for modern medicine and the chance to get part of it back. I too am a retired RN and have done my research. Also my three friends are very happy with theirs.
If you read drug inserts, you may never take another prescription medication. If you read a surgery consent, you may never have another surgery. I could go on but you get the point. People think Boston Scientific is a bad SCS because of a law suit, if they read further they'd learn it was over a design patent and another over a vena cava filter, not their SCS.

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I agree. I think many people are happy with the procedure. You are correct the 50% is what I was told by a manufactures representative. That is the criteria for going forward with the permanent implant after the trial. It seems that many people get more or less relief after the trial. Often the trial works better than the permanent implant or it takes a long time for the manufacturers rep to find a program that works well for the patient. In some cases after a successful trial, the manufacturers rep and the patient don’t find a good program and people turn the devices off and never use them or they get the device removed. I’ve had several surgeons tell me that people come to them wanting the device removed after the original doctors stonewalling the patient, or trying to convince them not to remove the devices. But like you said, a lot of people have a very good experience with the devices and just have to have routine maintenance like battery replacements, and lead adjustments and things like that in the future. The thing that surprised me most was how many people I talk to who had the device and they like the device but they were still taking pain pills. But I assume they were taking less pain pills then they took before getting the implant. Granted, my sister’s case where there was a complication with the surgery and crippled her for life is a rare event and is not the normal outcome.

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