Painful diabetic neuropathy is frustratingly difficult to treat. Even the best prescription medication for the condition, gabapentin (Neurontin), only works for a small minority of those who try it, and some members of the diabetes community have never found anything that works. Patients that do find some relief often use a combination of prescription medication, over-the-counter treatments, and non-medicinal techniques such as massage or foot elevation.
Tim Swartztrauber tried it all, and he found no benefit from any of it. His diabetic neuropathy pain was so debilitating that it was robbing him of his life.
That all changed when his doctor suggested a trial of a less common treatment: spinal cord stimulation. Tim was an instant convert, and today he’s enjoying life again, his pain largely resolved.
(The manufacturers of Nevro HFX put Diabetes Daily in touch with Tim, but this is not a sponsored post, and Tim is not a paid spokesman.)
Tim’s journey with diabetes had a traumatic beginning — a diagnosis of myelodysplastic syndrome and leukemia. His treatment odyssey eventually led to what was probably a case of steroid-induced diabetes. Steroids can cause hyperglycemia, and in Tim’s case, the effect was extreme.
“Back in 2015, I was diagnosed with leukemia. I had a bone marrow transplant and shortly after I developed graft versus host disease. I was on extremely high doses of steroids, and in January 2016, I was experiencing blurred vision and all that. I went in for an appointment. My blood sugar was 530 [mg/dL], and I had to stay in the hospital for seven days.”
In the following months, just as Tim thought he was getting his diabetes under control, his doctors ramped up his steroids usage again to deal with his other health issues. With his blood sugar spiking back up to dangerous levels, he began to experience painful diabetic neuropathy.
“I was diagnosed with neuropathy, and it was severe. I had trouble walking. It was just miserable. It was 24 hours a day, I was only sleeping about two or three hours at a time. When I laid down to go to bed, my left foot hurt the worst, and I had to prop it up on my other foot so it wouldn’t touch the mattress.
“There were times I didn’t even want to put on shoes because it hurt so bad. It would hurt to the touch. Just laying my foot on something would just kill me.”
Tim tried a lot of different therapies to help with the pain, but nothing seemed to work.
“They had me on opioids. At one point I was taking 15mg of oxycodone four times a day, and it wasn’t even touching the pain. In my opinion, opioids don’t solve the problem, they don’t even mask the problem. All it did was make me sleepy and goofy. It’s not a quality of life you would want to have, living on pain medicines.
“I used gabapentin. I tried a cream I applied to my feet. It really didn’t help all that much.
“We tried some shots to my legs, hips, and ankles. I didn’t know there were steroids in those shots, and after I got the shots, my sugar went up to 589 and I had to go to the hospital again.
“I even went to a month’s worth of yoga. I did learn to relax a little more, but it didn’t really help.”
Although the degree of pain that Tim felt was unusual, his general experience was typical. Many people with neuropathic pain find themselves trying all sorts of remedies, pharmaceutical and otherwise, sometimes with little success. (Opioids, probably the most commonly-prescribed treatment for painful neuropathy, are no longer recommended due to the danger of addiction and a lack of evidence that they are effective.)
“For a number of years, I didn’t do anything. I’d work and when I got home I’d just get in my chair and that was it.
“I was pretty miserable. My wife and I were always at each other’s throats because I never wanted to do anything. I was really depressed. I started on depression medicine.
“Finally, my palliative care doctor referred me to a specialist who put me through a very thorough check. He mentioned the spinal cord stimulation implant.”
Spinal cord stimulation involves a small device that delivers mild electrical pulses along thin wires to the spinal cord. These pulses essentially block pain signals from reaching the brain. Spinal cord stimulation has been used for years for many types of chronic pain (in the US, it is most commonly used for failed back surgery syndrome).
The Nevro HFX implantable device.
The scientific evidence in favor of spinal cord stimulation for people with diabetes is encouraging, but still emerging. A 2021 review noted that there have yet to be any blinded and randomized long-term trials of the technology, but observational trials suggest that many patients do enjoy long-lasting pain relief. The American Association of Clinical Endocrinology has recently endorsed high-frequency spinal cord stimulation as an option for people with “painful diabetic peripheral neuropathy that failed at least one medication.”
New patients undergo a trial period during which a temporary device is used to test the treatment. If everything goes well, a permanent device is surgically implanted underneath the skin. Nevro, the manufacturer of the device that Tim uses, reports that 90 percent of the patients that go through with a trial decide to get the permanent implant.
“I did a trial. The next morning, I noticed that my feet didn’t hurt as bad. The next day they got better, and the next day they got a little better.”
A week later, when they removed the temporary device, the pain started coming back. “I decided right then and there that I was gonna get the implant.”
Tim says that the procedure was a snap, and only took a few hours: “The surgery is not very invasive, very easy, not very painful.”
“The day after the implant was installed, my feet again got better. By the end of the week, I was like, ‘Oh my gosh, this is simply amazing.’ Every day it got better and better.
“I quit the gabapentin probably 3-4 days after surgery. Within a few months, I was totally off all pain meds. I don’t even take aspirin. I’m totally off my depression meds.”
“My life has totally changed ever since. Before I got sick, I had been an avid outdoorsman, but for years I couldn’t do anything. After the implant, I went on a 10-day fishing trip with no problems whatsoever. You just don’t know how this really changed my life.”
The HFX Nevro implant comes with a remote control that Tim can use to modulate the pain relief he receives. He worked with his medical team to design multiple programs that target different parts of his body, so he can deliver relief where and when he needs it most.
“I charge it every night, it takes about 15 minutes a night. You have this belt with a power pack and you have this pad that you put right over your implant.”
He reports that the implant itself is unobtrusive. “It’s just a little square under my skin. It doesn’t bother me, I don’t even know it’s in there.”
“Now I’m sleeping 7 hours a night, straight through. It’s been amazing for me. I can’t really put it into words. I can’t say it enough, it’s just crazy.”
“This thing just totally changes your life. I was skeptical of this at first, but you have to try it. I would recommend, go through the trial, see how it helps you. Just give it a chance.”