Because I cannot find much information on this topic, I thought it might be beneficial for me to share my experience with others with the hope that no one else feels alone after adverse results following a neurostimulator trial.
For the past 25 years, I have dealt with low back pain. The pain began after I fell when I was pregnant with my third child. I chipped my tailbone and really had a difficult time during the remainder of the pregnancy with low back and sciatica pain. The pain ebbed and flowed over the years and to deal with it, I had physical therapy, chiropractic, inversion therapy, and medication treatment.
About a year ago, the pain became much more intense and an MRI showed dessication of the vertebra, bulging discs, stenosis of the lower back, and scoliosis. Because I have not witnessed a successful back surgery from anyone I know, I opted for P.T and other treatments with a Pain Management Office. I’ve had denervations of L4 and L5 which seemed to help, but when they wanted to do one on the SI joint, our insurance company said no. The only other alternative was to go for a neurostimulator trial, a procedure that implants electrodes into the spinal space and sends electrical impulses to various areas of the spinal cord with hopes to distract the pain sensors. This is similar to a TENS unit, only on the inside and placed in the intrathecal spinal space. This procedure, by the way, is exponentially more expensive than the SI denervation–so not sure why the insurance company won’t allow the less invasive procedure.
The procedure begins with extensive psychological testing to ensure that the patient is mentally able to handle an implanted device inside their body. After passing the 1200 question exam and the psychological evaluation, we set up the trial. I went in this past Friday for the trial. I was sedated for the procedure which amounted to implanting 3 ten inch leads into my spinal space. Each of the leads is wrapped in several metal bands which the Medtronics technician can use to program the external battery worn like a fanny pack for the one week trial.
When the procedure was finished, the technician began to program the device, which, when it was operating, felt like a buzzing sensation from my low back to my legs. Because of the physical nature of my spine, the sensation affected only my left side and both legs. I was sent home with a couple of programs to adjust, with instructions not to lift more than 5 pounds, bend or stretch my arms above my shoulders. I complied completely.
By the next day, I noticed a couple of things: I felt like I was very cold and had shivering feet, my right calf muscle was very painful and felt as if it was spasming, the sensations were not reaching my right side (the worst side), and it felt as if electricity was bursting from my toes and heels. I called the office first thing Monday morning and told them that I felt the trial wasn’t working because of my symptoms. They had me come in and meet with the Medtronics tech who reprogrammed the unit to reach my right side. I felt so good when it had adjusted it, and was hopeful that this would lead to a permanent implant.
My enthusiasm was short-lived. By Monday evening, I was having trouble walking because both legs were hurting, I was continuing to feel cold sensations in my feet, my legs were swelling and I began to feel intense pain in my arms. I shut the unit off.
After a fitful night of only sleeping about an hour or two, I called the Pain Clinic Tuesday morning and told them to take the leads out and stop the trial. I could barely dress myself to get to the clinic because my muscles hurt so badly. When I got to the clinic and explained everything (while sobbing uncontrollably) to the PA, she said that my symptoms were not from the stimulator trial and that I either had fibromyalgia or the flu. I have neither. The leads were removed and I was sent on my way with pain medication and told to come back in a month.
Left on my own, I began scouring the internet, chronic pain messages boards and information on spinal cord stimulators and saw something called overstimulation as one of the possible adverse effects of the procedure, but could find nothing about what this meant.
After spending most of the sleeping hours last night researching this condition, I learned that overstimulation of the spinal cord can cause all of my symptoms–but why didn’t the Pain Clinic admit this could happen? Meanwhile, I still can barely walk, barely move my arms and still have the low back pain. To say I am frustrated would be a gross understatement. While I am glad to know that this condition is directly related to the spinal cord stimulator, I don’t know whether these symptoms are permanent or not. I am praying that this pain will dissipate soon, but after extensive reading on this, I am concerned that this unit has caused irreparable damage to my body.
Now, I don’t fault the stimulator or the doctor because I know that many people have had great success with these units. But where I do have a problem is that my symptoms were so easily and carelessly tossed off to fibromyalgia or the flu–rather than to the neurostimulator trial. And today, no follow up from the clinic or Medtronics about my problems with this unit. It just seems so wrong to me and makes me believe that the only thing that matters to them is making money.