What has treatment looked like?

When I finally obtained a diagnosis almost 5 years ago, the doctor walked into the room and let me know that this was the “crappiest diagnoses” he could give me. I was told there was no hope and that this condition would last forever and get worse over time. After extensive research, we learned about some individuals achieving remission in their symptoms. So, in pursuit of minimizing disease progression, and with the belief in the possibility for remission, I underwent numerous treatments with a world-renowned neurological pain specialist at the Shepherd Center in Atlanta, as well as with numerous other doctors. Various treatments included: 

  • Nerve block procedures; 
  • Prescription medications and pain killers;
  • Graded Motor Imagery Therapy; 
  • Orthopedic boot for 8 months;
  • Cortisone shots;  
  • Transcutaneous electrical nerve stimulation; 
  • Physical therapy multiple times a week, etc.

Unfortunately, my condition only worsened, but I was still hopeful that one of these modalities would be the answer. What I didn’t realize was that these treatments were merely band-aids aimed at reducing my symptoms, and they weren’t even doing that. My body needed help at the root source–my central and autonomic nervous systems. It needed assistance in healing itself.

Addressing the Root Cause

After more research, I discovered the Spero Clinic in Fayetteville, Arkansas–a one-of-a-kind neurological center that specializes in helping the nervous system heal. It deals with more CRPS cases than anywhere else in the world! After being on the waitlist for over 6 months, I moved to Arkansas in May of 2022 with the goal of achieving remission. (In order to be considered in full remission, a patient needs to be pain and symptom free for 2 solid weeks.)

From May of ’22 to May of ’23, I was immersed in the intensive treatment program–dedicating all my energy to addressing the many challenges posed by CRPS and other comorbidities. I also saw specialists from NC, NE, and NY as an extension of my treatment, and I experienced a great amount of progress, including moments of some relief from the gripping pain. I achieved milestones I once thought impossible, such as running, walking a mile, standing for an hour, and performing tasks that were previously out of reach! My visible involuntary movement stopped; my constant headache dropped 4-5 points on the pain scale; my baseline pain dropped; and I was experiencing decreased overall symptoms and decreased pain. Although I encountered setbacks along the way, the progress I made during this time provided invaluable hope and reinforced my belief in the potential of remission. Here are some photos from my time in Arkansas.

Despite the positive strides made, I was forced to make the heartbreaking decision to leave the treatment program. The financial constraints became overwhelming as the cost of $200,000 had depleted all available funds, preventing me from continuing the much-needed interventions. It was a deeply difficult choice, as I didn’t know exactly what departing treatment meant when I wasn’t yet in remission.

Though the treatment was so expensive, I don’t regret it at all!  My progress was amazing, and I’d give anything to achieve healing. Although I’m currently dealing with some discouragement and sadness, I remain steadfast in my pursuit of healing and eagerly anticipate the day when I reach remission.