CRPS Awareness Day 9: My CRPS and DRG Story
Writen by Marcia Nolting for the RSDSA blog.
Treatments for CRPS or RSD vary per person. We would like to note that you should always consult with your medical team about treatment options. For Marcia, DRG was the right answer. See what she was able to do due to DRG.
My name is Marcia and I’ve had RSD for almost ten years and as of writing this, am post Abbott DRG stimulation surgery 4 months.
A decade ago, I tripped over a step and thought someone had cut my left ankle/foot off, it hurt so bad. The pain was instant, continuous and unrelenting. The ER thought I was insane and sent me home with what they termed a “sprain” and to rest it. (translation, get over it crazy woman, we aren’t giving you drugs).
Luckily, I was quickly diagnosed and found an appropriate doctor. Following that came ten doctors and every treatment available in the United States. Spinal injections, nervings, nerve suppressant drugs, pain killers, and a spinal cord simulator designed for back pain (that was all there was at the time).
Each of those things helped a little, and combined was enough to allow me to continue walking, but chronic pain was a daily reality for me and unfortunately everyone around me who had to deal with me, dealing with the pain. There were many times when I would be in bed at night, crying myself to sleep (where no one could see me), talking myself into getting through just one more day. Many days were like that…just get through today…just get through tonight, you can do this, you are stronger than this condition, you will be able to survive.
Some nights I honestly don’t know if I believed that, I just knew that I couldn’t give up. I have a wonderful family, loving husband, and kids I had to stay strong for. My youngest doesn’t know who I am, except after RSD and essentially as a “broken” person. I just kept thinking that I had to hang in there until technology/medicine caught up to my condition and there was another option. I hoped to show my son my other self, my true self, someday.
Then Dr. Gullo and Dr. Heros, along with the team of Abbott neuromodulation representatives, told me about DRG stimulation and suggested I try it. I admit to feeling pretty cynical, like, “yeah, right, ok…been there done that, don’t get my hopes up.” The trial was good, but I had no idea what the machine was really capable of until a couple months later. About 2 months after surgery I realized, “Wow, I can work a normal person’s work day and not be a total *itch and snarl at everyone!” Then I started to feel something extremely powerful, hope.
Another month went by and I noticed that compared to the other spinal cord simulator I had first, it was simply worlds apart. I have stopped using 3 meds. Also, I’m not using any prescription pain medication at all, except the machine. This is the first time in 10 years that’s been a possibility.
When we went on vacation, I was able to walk through the airport without using a wheelchair for the first time. I was able to do most of the activities with my family which was exciting! I went to a Renaissance Fair with my family and walked all day on that uneven ground which previously would have been a harsh sentence of pain for days!
I’ve been able to do a mostly normal work day without taking anything more extensive than Aleve or Tylenol. I had given up and sold all my horses and show equipment (after a lifetime of being an equestrian) because I figured that was not something I could realistically do anymore, and I needed to face reality.
Well just last Friday, I rode with my friends for a half-day girls ride, and I WAS GOOD TO GO!!!!!
Life-changing are the only words to describe it. I’m hoping to get back to my WHOLE life! It has changed my pain level for the better. An over 90% improvement with DRG, and I’m living proof this is a successful treatment option. I’m happier, healthier, easier to live with and so much more optimistic about the future.
I think I’ll travel the world… I’m done rearranging my life around RSD, I WIN!
If you would like to find a location/options near you, look up https://www.sjm.com/en/patients/resources-and-support/clinic-locator/painspecialist. I hope everyone with this awful condition finds help!