Spinal cord stimulators (SCS) have become a common method of treating chronic pain. The system consists of a signal generator and lead wires that are implanted into the spinal canal. The lead wires have electrodes on them. The signal generator sends electrical signals to the electrodes on top of the spinal cord and those signals interrupt the pain process. Traditional stimulation uses parasthesia- which is a tingling sensation that “covers up” the pain. The newer stimulators use high frequency waves, which are imperceptible to the patient. Doctors are able to use trial implants so the patient can give it a test drive to see if it works before they go for the full implant. For the trial, the lead wires are put in place through the skin, then connected to an external signal generator that gets carried on a belt. For the trial time, you have wires coming out of your back, and the skin is all taped up. I have had 3 of these trials, so I’ll share my thoughts and some of the experiences.
One major thing I don’t like about SCS is that doctors are more willing to throw in a stimulator than to actually try to fix the source of your pain. There can be terrible, blatant mechanical issues with the spine, but they choose to cover it up with stimulation rather than address it, or to refer you back to spine surgery after the pain management efforts have failed. Based on my experience, this is not the correct order of operations. If you continue to have some sort of mechanical problem generating pain, then you will not be successful with SCS. The stimulator is always “playing catch-up” with the pain, and can never stay ahead of it. Also, if the SCS is working well, then the patient may end up causing more damage to their pain generating region because they are not aware of the pain they are causing. 2 of my trials were done before the surgical fix I really needed was done, and neither was successful.
As far as patient selection criteria, I found the most important criteria is desperation. How desperate are you? Are you desperate enough to have electrical wires threaded up your spinal canal and have a battery powered signal generator implanted inside of you? Are you desperate enough to not care that the battery will eventually die on the stimulator and you will need another surgery to replace it? Personally, I’m so desperate that if you gave me a handful of dog shit and told me that if I eat it, it will help my pain, I would eat that pile of dog shit. I was so desperate that I ignored all the red flags from my doctor, including that he lied to me twice. I was so desperate, I was willing to do nearly anything to make sure the trial went forward. That desperation made me a perfect candidate for SCS.
Part of the process for getting approved for the SCS trial is a pysch consult. I felt like the psych consult was the best part of the process of my last SCS trial. I was referred to a PhD psychologist. He didn’t take insurance, so I had to pay $120 out of pocket. The insurance companies are the ones who require these consults, so of course they pay for them. I didn’t find out until after the fact that the psychologist almost exclusively does psych consults for SCS trials. His whole practice is based on it. I was so desperate I missed this very important detail.
The part I liked was that he helped set expectations. He had me fill out a questionnaire before I met with him. He looked it over and said there was one problem with it. I wrote that my expectation was for a 30% pain decrease. He said I should have expected more. I clarified and said that I hoped for a 30% decrease, and that it would be enough to change my life, and that I of course would want better than that. His point though was that I should be fully expecting an 80% or more decrease in pain. If I only received a 30% decrease, then it just wouldn’t be worth it. My desperation told me it would be, but he acted as a nice check to that desperation. He also told me the trial implant would be the best relief, and the permanent implant usually doesn’t hit the same level of pain relief due to the surgical implant. He offered a little bit of counseling that my pain management doctor only exaggerated.
The process is to typically have the trial for 1 week. The SCS representative is there during the implant surgery. Afterwards they come and program the signal generator for you. They give you a handful of different programs you can try out. After about 3 or 4 days, you meet with the representative again in the doctor’s office to do reprogramming. You tell them what worked and what didn’t, and they try to focus the programming to give you an even better experience. It’s also a chance for the medical staff to check for infection and proper lead placement.
My 3 trials were in about a 10 year span. The first one was a traditional, parasthesia stimulator. That one was working OK for a couple days until the lead wires migrated severely. I ended up in the emergency room for that one and the doctor never even bothered following up with me. Before that happened, I remember having a handful of sessions where the pain just melted away like a miracle. The pain only went away while using the stimulator, and when I turned it off, the pain immediately came back. I couldn’t sleep or drive with it on. If I walked around or made sudden movements while it was on, it gave me a massive electrical jolt I could feel everywhere in my body.
The second trial went much more smoothly. This was a high frequency stimulator. You can leave these on all the time and don’t have to worry about electric jolts. I woke up the next day and felt very good. The SCS rep called me and told me that was most likely a placebo effect. Unfortunately it turned out to be just that. The good feeling faded away and never came back. I had the trial for a week and went to get it removed. My doctor convinced me to continue it through the weekend to give it more of a chance. I ended up turning it off before the weekend was over because it started causing more pain.
I noted what the typical steps for an SCS trial were because the third trial was anything but typical. The doctor I saw pretty much only did stimulators. In retrospect, everything about the consultations with him was meant to steer me towards doing the trial. His staff drug tested me before my first visit, then lied to me about why they did it. Twice. The doctor said unethical things like, “I believe in these so much I put on in my father”, and “You’re so smart for knowing the medical jargon. When I fix your pain, you need to promise me you’ll go to medical school.” He told me the trial would be for 1 week, but after the implant, the rep told me it would only be 4 days. That was the second lie. When problems arise with trials, it’s usually later in the trial. There is lead migration, infection, or the stimulator could just stop being effective. Shortening the trial hedges the bet that you will move forward for the full implant.
This trial never made it to 4 days, however. I had the same placebo effect the next morning, though the rep denied it was an actual thing. She asked, “Where did you hear that? No, that’s not a thing.” I told her about a couple positive things I did, and she hyper-focused on those things, trying to reassure me that these were signs the stimulator was working properly. On day 2, it was causing me a lot of pain, so I shut it off. I still didn’t feel better, so I unplugged it, then I finally felt better. I went to work on day 3 and turned it back on. Within 15 minutes it generated so much pain that it brought me to my knees. I had massive tremors in my arms and legs. I called the rep and she told me to meet her at the doctor’s office right away. They took x-rays and told me the leads were still in position. They ended up ending the trial and removing the leads from my spine. I went back the next day for a follow up and the doctor denied anything was wrong. He defended the SCS manufacturer who the rep worked for. He had a medical assistant stand in the corner of the room, I assume for liability reasons. Then he fired me as a patient.
To say I haven’t had good experiences with SCS would be putting it lightly. They can be very troublesome devices. Some doctors are making a lot of money by performing these implants, and some doctors even turn to unethical means to help encourage patients to go through with the trials and even the full implant. In retrospect, I should have run when the last doctor lied to me about the drug testing, but I was so very desperate. I proved that to my doctor at every opportunity. I almost feel like he set up tests for me to see just how desperate I was. Again, I would eat a pile of dog shit if you told me it would help my pain.
Despite the problems and potentially shady practices, SCS can help people. I was praying so hard it would help me. I am happy for the people that SCS helps. I am jealous! I hope it provides pain relief that has no end. If you are considering SCS, please do your due diligence. Research the procedure, check forums to find other people’s experiences, do some research on the doctor. Check this website to see how much your doctor is paid by the SCS manufacturer: https://openpaymentsdata.cms.gov/. Watch personal (not corporate) YouTube videos to see people’s experiences. Ask all the questions you can think of.
If you do go ahead with the trial, make sure you keep in constant contact with your rep, and make sure you really give that stimulator a good test run. It’s your trial, get the most out of it. Take the advice of the psychologist I saw: Expect 80% pain relief or better, and remember that number won’t be as high for the permanent implant. It should make your more active and give you better sleep. Remember the battery will die someday and the signal generator will have to be replaced in another surgery. My trials were bad ones, but that doesn’t mean yours will be. My experience with my last doctor was terrible, but that doesn’t mean yours will be. Please just do your homework, and if you end up with a doctor like mine, don’t be afraid to look for a second opinion from a different doctor.
Remember: Desperation is the key criteria doctors are looking for in candidate for SCS. That desperation should be yours, and not a tool for the doctor to use to steer you into a trial. Keep in mind the doctor is just as desperate to get you into a trial, so use it as a tool to get what you need, not to let the doctor get what they want. No matter how desperate you are, please don’t make bad decisions (easier said than done, I know). And if you have some sort of mechanical issue that is causing the pain, I would advise against SCS until the problem has been properly treated. Please feel free to contact me for any questions!