I have Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy. To those with the diagnosis, no explanation is needed. To those unfamiliar with severe chronic nerve pain, the best way I can describe it is feeling like your foot and ankle (or other affected body part) feels like it’s on fire. Since most of us have never lit any extremities on fire, imagine the last time you were stung by a fire ant or a wasp, exactly the time that it was stinging you. Not the soreness afterwards relieved by a cream or lotion, but the unrelenting burn that persists as long as that little bugger is holding on for dear life injecting its formic acid until dramatically being shaken off by its unsuspecting victim. Now imagine that intense burning sensation 24/7, from the moment you wake up until the moment you go to sleep, for years. Sometimes the burning is interrupted by the feeling of being stabbed repeatedly with a scalding poker, hundreds of hot needles, or a branding iron that can’t be taken away. I will tell you my full story later, but with this blog, I want to raise awareness for a breakthrough surgical procedure and give hope to other CRPS/RDS and fibromyalgia sufferers that YOU CAN LIVE A LIFE WITHOUT PAIN! In January 2017, I underwent a DRG stimulator implant, and it saved my life.
I have no financial interest or gain, only the perspective of both a doctor, researcher, and chronic pain patient with a passion to advocate for patients who don’t know that this device is an option or who may be afraid to try it. 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! I was scared to death about the trial process and the thought of receiving no pain relief, as all prior treatments had either failed or dramatically exacerbated my pain. But living on high doses of numerous pain meds, my pain was a 5-6/10 at best (first thing in the morning after taking all meds) and 9-10 in the evenings, sometimes even waking me up at night. I had to hang on to the hope that this time, my 11th treatment, I would be in that 90% that achieved pain relief instead of the rare minority with an adverse reaction.
To get a spinal cord stimulator, you have to have a psychological evaluation, basically to prove that you can handle the thought of having a foreign object implanted. That was the easy part. Fortunately, my eval proved that I was a good candidate for the procedure and allowed me to find a great psychologist to help those with chronic pain and illness. The next step is scheduling the trial. This is the part that scared me. I have dealt with a strong phobia of needles since childhood. Even though all my surgeries and treatments had pretty much desensitized me to the needles and my doctoral training allowed for a fair amount of time in the OR, I had never had to be awake during any of my procedures. How aware would I be of the sights, sounds, smells, and sensations?!? Well, I vaguely remember someone calling my name and then asking where I felt the tingling (they have to wake you up to ensure the leads are placed in the correct location), then adjusting it, then…waking up in recovery. I barely remembered anything about being awake in the OR and felt no pain or anxiety! My rep adjusted the settings on my stimulator, and soon I was on my way home. About 15 minutes into the drive, 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.
I was told that the goal of the trial was pain relief by at least 50% and that the permanent implant would be more effective. I received 75-100% pain relief during the trial period. My final fear was having the temporary leads removed, but that was a huge mind-over-matter situation. I felt absolutely nothing during the lead pull (removing the wire from the epidural space).
4 weeks later, I underwent the permanent implantation surgery. I do not remember anything from being awake in the OR that time. My back was sore for about 1-2 weeks, but manageable with pain medication, as with any surgery. My foot pain at this point was 90-100% controlled. Within 2 weeks, I was completely off of Lyrica, and in 6 weeks, completely off of ALL PAIN MEDS with the exception of Ibuprofen as needed, and my pain level now is a 0-1, essentially 100% reduction of all pain with no meds needed. I went from no quality of life, no social life, the inability to even go to the grocery store, extreme difficulty holding a full-time job because of the severe-to-excruciating pain to the prospect of living a normal life in an instant. I am currently 8 weeks out from surgery and have gone on my first hike in 4 years, worn dresses and skirts to work because I can wear “cute” shoes again, gone out with friends after work and on weekends without any need to recover from pain, etc. I have had to have my settings adjusted approximately every 2 weeks or so, which I am told is common during the healing period. I have been blessed with some amazingly knowledgeable and supportive reps who have also been paramount to my healing process, both physically and emotionally.
The surgery has far surpassed any hopes that I had to regain any semblance of a normal life again. I believe that God puts us in places and with people at exactly the time we need them, or they need us. To deal with a diagnosis and severe pain that has forced you to abandon your previous plans for your professional and personal future and then in an instant be out of the pain that was holding you back from all your hopes and dreams is absolutely indescribable. My first walk (2 miles) after surgery is when this moment hit, and I was overcome with the most powerful emotion that can best be labeled as joy or hope beyond human comprehension. It is best feeling in the world.
Until next time,