Brandi Stewart was in her mid-20s and gearing up for her career in neuro-optometry. And then one day, she stepped out of bed and everything changed. It would take years and multiple doctors for her to find the cause of her life-altering chronic pain. We talked to Brandi and her physician’s assistant about her pain and how DRG stimulation provided the relief she needed to get back to her life. This DRG stimulation review is her story, in her words.
How pain begins
Brandi Stewart talks about her journey with DRG stimulation at her blog Beauty in Pain. In 2013, she writes, she stepped out of bed one morning and collapsed. Her right foot couldn’t bear her weight. But, since she was on her feet all day, her doctor diagnosed it as plantar fasciitis. She underwent therapy with a CAM walker and medications, but something still didn’t seem right. She looked for another answer. As she writes:
“In my case, this is what saved me, fueled my fight, let me know that just because one doctor says there’s nothing more that can be done, I know that just means there may be someone else out there with different training and experiences who may have answers. You’ll see later in my story how I’d have a much different ending if I didn’t have this tenacious attitude.”
A follow-up appointment resulted in a tarsal tunnel syndrome diagnosis. Brandi was prescribed custom orthotics and physical therapy, which didn’t provide any relief. She was discouraged at this point, writing:
“Less than a month after moving back, my pain had become more severe and impairing than a kidney stone I had once. I found a local podiatrist, who immediately thought I had tarsal tunnel syndrome (there’s that word again) and ordered the necessary testing, one of which is a nerve conduction study, which checks for nerve function and compression. The testing indicated that my posterior tibial nerve was so entrapped that, in the words of the neurologist, I ‘was on the short-track for surgery’ or risk permanent nerve damage. I went back to my podiatrist, who confirmed the diagnosis of tarsal tunnel and proposed that I be fit in a CAM walker and physical therapy. Hold up…that sounds familiar. Didn’t I already do that for 3 months?!?”
Misdiagnoses lead to more time in pain
As too many chronic pain patients know, misdiagnoses are common especially for complicated chronic pain conditions. Too often, pain patients suffer for years before a doctor is able to find what’s causing their pain. Working with a pain specialist who has direct experience in this can help, but it can still be difficult to diagnose a condition.
After her doctor’s suggestion to undergo more physical therapy, Brandi visited a foot and ankle specialist. He agreed with the tarsal tunnel syndrome diagnosis but was unable to provide help. Next, she visited orthopedic surgeon who performed surgery.
“By this point, I was in so much pain that I was icing my foot and vomiting between patients. I finally realized that I needed to take a leave of absence from school. It was 2 weeks until I saw the orthopedic surgeon and then 4 days until my surgery was scheduled. My foot was completely immobilized at a 45 degree angle for 2 weeks after surgery until suture removal, and then it was 6 more weeks until I was allowed to fully bear weight.”
After the procedure, Brandi writes:
“A significant amount of atrophy had developed. Some pain persisted, but having never had surgery before, I just assumed my foot would never be the same.”
Symptoms point to CRPS
In May 2015, a simple stubbed toe led to the same burning pain and a visit to an urgent care center. From there, she visited a podiatrist. The doctor diagnosed tarsal tunnel syndrome in her left foot, which led to another surgery. After, she tried cortisone injections for pain relief. Next came another tarsal tunnel revision in her right foot to remove scar tissue. Brandi writes:
“My pain was relieved and doing relatively well in physical therapy, until it suddenly skyrocketed back to that constant burning nerve pain. I was also starting to show some skin and vascular changes, which is concerning for the development of CRPS.”
After her second surgery on her right foot, Brandi writes:
“I ended up in pain management. Oral meds barely helped, had horrible side effects, and developed a tolerance very quickly. I underwent a nerve block, which only helped for 2 weeks. In June 2016, I had a cryotherapy ablation of the nerve, which helped, but not enough to discontinue the oral meds, and only for 6 weeks. The pain specialist I was seeing at this time wanted to try cryo again but more proximally (farther up the leg) in the hopes that the effects would last longer. In September 2016, I had my second cryoablation. I went in thinking that this was going to help, it was just going to be a matter of by how much and for how long. I hadn’t entertained the thought that it wouldn’t work, or that it could make the pain worse. But that’s exactly what happened.”
This failure of cryotherapy helped confirm that CRPS was leading to Brandi’s pain. The following video gives a brief overview of this complicated and incredibly painful condition.
Patient decides to undergo DRG stimulation
“I was presented with the option to pursue the trial phase of the Axium DRG Neuromodulation Therapy device (St Jude Medical) in September 2016, a new type of spinal cord stimulator that had only just been approved for use in the United States by the FDA in February 2016. According to clinical trials (yes, I read them, I’m a nerd), this device succeeded in reducing pain in 90% of patients at an average pain reduction of 80%. Other devices had about a 50-70% success rate, so I was going to settle for nothing but the DRG!”
Dr. Le, a pain specialist at Pain Doctor, decided that DRG stimulation reviews warranted its use in Brandi’s case. Brandi’s physician assistant, Jessica, talked about why they thought DRG stimulation would be so helpful.
“Her symptoms were consistent with causalgia or Complex Regional Pain Syndrome (CRPS) initially in the right foot. This type of stimulation has been shown to offer more effective relief to patients with this type of neuropathic pain compared to traditional spinal cord stimulators. DRG also offers more focal distribution of stimulation by targeting the dorsal root ganglion for a specific area of pain such as the foot. A trial of DRG stimulation was recommended after she did not obtain long-term pain control with right posterior tibial nerve blocks and cryotherapy to this same nerve. She was also not experiencing good pain control with oral medications (opioids and neuropathic agents) and having significant functional limitations.”
Afterwards, Brandi wrote: “I underwent a DRG stimulator implant, and it saved my life.”
“About 15 minutes into the drive home, I started crying because it was already helping the pain. I was about an hour out of surgery and in less pain than I had been in for years.”
How does DRG stimulation work?
The following video gives another DRG stimulation review, as well as a brief overview of the procedure. You can find more about this technology through St. Jude Medical, the manufacturers of DRG stimulators.
Brandi’s PA, Jessica, goes on to explain what patients can expect if they undergo the procedure.
“Any patient that wants to pursue a DRG stimulation trial will need to complete a behavioral health evaluation with a licensed psychologist or psychotherapist to determine that they are a good candidate. Then a seven day trial will be scheduled. During the trial they will have one to two leads implanted (this depends on the pain) and the battery will remain outside the skin. No incisions required. They can pretty much resume normal activity other than excessive bending, twisting, lifting. Patients will then return to the pain practice and have their leads pulled in the office. They will leave the office exactly as they were prior to the trial. The majority of patients experience immediate relief during the trial if it is going to work for their pain as soon as the device is turned on.”
Brandi goes on to give some great advice about preparing for the procedure in a blog post. She suggests that before the DRG procedure, patients:
- Work on core strengthening since you’ll have to avoid bending and twisting after the procedure
- Using a grabber
- Training yourself to sleep on the opposite side of the implant
- Avoid long road trips until you’re fully healed
A DRG stimulation review: Recovery
Jessica, her PA, talks about what she can expect with her recovery:
“Long-term Brandi will probably use her DRG stimulator daily for pain relief. She has been able to wean off of all opioids and no longer needs them for pain. Brandi may require them in the future but hopefully with the relief from her stimulator this can be sparing and only for flares in her chronic pain symptoms. She may need an occasional reprogramming session with a St. Jude representative to optimize use of her stimulator which on average is one to three times per year. She may also need a battery replacement for her stimulator in the future in five to eight years approximately. Patients are in control of the device via a remote therefore do not have to use it 24/7 but can if needed.”
At the end of it, DRG stimulation provided the pain relief Brandi needed. In her most recent DRG stimulation review post, Brandi writes:
“Out of all the options, I am choosing the DRG, not as a last resort, but as a first-line treatment. From my research and experience with my right foot, I have seen so much evidence of this as a superior pain management procedure for CRPS and my type of neuropathy.”
Get the help you need
If you’re interested in hearing from other patients and their DRG stimulation review, or to talk to a doctor about your options, click the button below. There you’ll be able to search for a pain specialist in your area who can advise you on your options for CRPS treatments or DRG stimulation. Keep up with Brandi’s recovery at https://beautyinpaindrg.blog/blog/.