I have a sitting disability caused by chronic pain in my lower back and left leg. It hurts when I sit, stand, or lie in any one position for more than half an hour. For the past 17 years, I have been receiving, on and off: physical and occupational therapy, chiropractic therapy, massage, acupuncture and dry needling, acupressure, steroid injections, biofeedback, and every pain medicine in the book. Seven years ago I even had back surgery, a lumbar fusion at the L5-S1 level of the spine. Nothing has worked and I have tried everything out there. Except for one.
For years, when going to my physiatrist’s (primary back pain doctor) office, I had seen a model for a Medtronic Spinal Cord Stimulator sitting on top of his desk. The doctor had kept reminding me that it was the last resort, only after shots and other medications were tried. Echoes of my previous physiatrist rang through my ears, as he used to tell me surgery was the last resort.
I knew it was coming. New physical therapists weren’t helping, the month-long treatment program at the Rehabilitation Institute of Chicago, one of the best in the country, hadn’t helped, and I couldn’t even feel the injections that were supposed to block pain. The doctor started handing me information about the spinal cord stimulator and gave me the number to the Medtronic rep in the Chicago area. He reminded me that he did not make a commission off of sales of this equipment, and I believe him to this day.
In short, a spinal cord stimulator is like a Transcutaneous Electrical Nerve Stimulation (TENS) unit inside of you that sends electrical currents to the spinal cord. It is operated via remote control and has basic settings that need to be constantly adjusted. You start out with a seven-day trial period where the stimulator is outside of your body but still attached to the spinal cord through a break in the skin. If the test works, the unit is surgically implanted inside you.
This was not an easy decision to make, and I spent a lot of time researching this procedure. With the lumbar fusion, the decision was easy, simply because the doctor recommended it. With the spinal cord stimulator, there are risks and a high possibility of failure. Even my doctor suggested I research and think about it some more.
Nobody in my life had ever heard of a spinal cord stimulator, including a few nurses I know. There was very little about it on the Internet that was not published by the manufacturers themselves. I joined a Facebook group for people with spinal cord stimulators or who were about to get them installed. I followed it for two years, reading the trials and tribulations of other people in similar predicaments as me. I tried to keep in mind that this was a group of people who had tried everything else but failed. I also tried to keep in mind that people who have had spinal cord stimulators successfully for a long time, with all the kinks worked out, would lose interest in talking about it in an online forum. So would the people who have had the trial and it didn’t work out. Still, I gathered a lot of information from those patients on the Facebook group that isn’t google-able.
I am willing to put up with a painful surgery and difficult recovery for something that is going to work. However, often times this surgery doesn’t work. Sometimes a patient will have a successful seven-day trial, but the results don’t last and another surgery is needed to remove the device. The battery needs to be surgically replaced every five years, with another recovery time, although improvements to batteries make them last longer. Sometimes the lead, the wire that runs from the machine to your spinal cord, can move out of place if you have a bad fall or accident. Another surgery. Some people have complained that they cannot adjust the remote control by themselves without interaction with the company representative, or have ended up in the hospital because of incorrect settings. Some had described a buzzing feeling they cannot get rid of. One woman had said she felt a jolting sensation every time she went through the security at Walmart. These are the things I read in the online forum from patients with various brands of spinal cord stimulator implants.
The definition of success for spinal cord stimulator is a 50% reduction in pain. This isn’t a magic cure by anyone’s measurement. But for those of us who suffer from chronic pain, a 50% pain reduction would be a miracle. However, because of my history of a failed back surgery and bipolar disorder, which can lead patients to perceive reduced pain during manic episodes, the surgeon said that I would probably have even less reduction in pain. On top of that, I would have less than a 30% chance of it being successful in the long run. That is a small margin to justify cutting me open for a condition that is not life threatening.
Then there was the talk about price. I know, I know, there is no price on your health. But there is. At this point, I had exhausted my savings; sold off my 401(k), my car, and my home; and was not working, nor was I likely to be working anytime soon. The hospital with the only spinal cord stimulator surgeon in the Chicagoland area calculated that after Medicare pays their share, I would owe over $6000. The hospital did not do “charity care.” The Medtronic representative told me that I would pay only $2000 due to a cap in Medicare. When I called Medicare, they disagreed with what the rep said about the cap on this procedure and gave me a higher price than both of them. It is always difficult to determine health care costs before something happens and patients are left with sticker shock. Also, if the surgery didn’t work out and I needed it removed, it would be another $1200. Even after all of that, I still considered going further into medical debt for the surgery.
I received an evaluation with the surgeon, who sent me for an eight-hour psychological evaluation they put everybody through who gets the spinal cord stimulator. It measures spatial skills, short-term and long-term memory, color and word recognition skills, and other tests. People who have this test need to be able to interact with the Medtronic representative for adjustments and know what they are getting themselves into, especially being comfortable with having a machine inside of them.
I passed the psychological test and was scheduled to have the surgery a week later. I was carefully weighing all of the cons against the one pro: that I was desperate for pain relief and there was nothing else out there.After long and careful deliberation, I canceled the surgery three days before the scheduled date.
My cold feet came at a time when I was starting to learn how to recognize red flags in the health care industry. Like every other man in America, I was diagnosed with low testosterone levels. The doctor gave me a free sample of testosterone solution that looks like a deodorant stick. I noticed that my shelf of free sample medications was now larger than my shelf of prescribed medications. I receive a new phone call every week offering free home health care paid for by my insurance. And although he was nice, I felt like the Medtronic rep was too aggressive, doing everything he could to get me to have the surgery. These hard sell tactics were making me wonder if their interests lay with what benefited them, and not what was best for me. I was becoming wary because I’ve been screwed over too many times before with empty promises of back relief elixirs. All these things ultimately led to my decision to back out, pardon the pun.
I didn’t know at the time, but a couple of months before I was scheduled to have the surgery, Medtronic paid the US Department of Justice $2.8 million after it was accused of trying to sell the spinal cord stimulator to patients who would probably not benefit. Medtronic settled without admitting any wrongdoing. I am not equipped to make a determination on Medtronic’s ethics. As a patient, I am operating from a position of severe disadvantage. If it doesn’t come from my doctor or Google or WebMD, I have no way of knowing if Medtronic is legit or selling snake oil.
Just because I passed on the spinal cord stimulator, doesn’t mean that somebody else should make the same decision. In fact, I may change my mind in the future and get one. It is up to the patient and his or her doctor to decide, given their own situation and diagnosis.
There are new technologies and improvements for spinal cord stimulators coming out all the time. I do my best to keep up with them and so does my doctor. But at this time, it’s a no-go for me. I’ve stopped telling myself that this is the end of the line. I’m still searching for better ways to relieve my pain. That’s life for a chronic pain patient.
image by National Pain Report