My name is Beth Shaver and I am 34-years-old. After injuring my right ankle in a soccer game in 2011, I underwent four repair surgeries and developed complications leading to Complex Regional Pain Syndrome Type 2 (CRPS II), vastly limiting my mobility and quality of life due to pain. I traveled the country in search of possible solutions and each time I was met with the verdict that there was nothing more that could be done and to consider a life of pain management. Unwilling to accept that, I pressed on.
In 2013, I discovered the ExoSym (IDEO) device through the Hanger Clinic in Gig Harbor, WA – a hybrid prosthetic-orthotic that provides those with lower leg injuries and conditions the ability to offload, stand, walk and run again without pain. For the first time in two years, I could walk without crutches. I returned to my active lifestyle with so much gratitude – conquering several half marathons, a century ride, 24-hr adventure and a 120 mile multisport adventure, and competed in CrossFit. The ExoSym truly gave me a second chance and I decided to pay it forward by starting a blog, ExoSymplyAmazing, in an effort to help other patients find the strength in all they have overcome. To dare to live, ExoSymplyAmazing.
Unfortunately, as luck would have it, I fell from a rope in 2016 landing on my bad leg, causing damage throughout my lower limb. Not able to find a surgeon who would accept my case because of my CRPS, I decided to cope by altering my gait in the ExoSym in an attempt to lessen the pain – and I continued on like this for several years. In that same year, I was injured in a car accident, setting me back yet again.
In 2018, the impact from the fall was no longer something I could push through – as my nerve condition (CRPS) had greatly worsened due to the injuries. Thankfully, I found incredible surgeon, physical therapist, and ortho and pain team during that time who decided to take my leg on. From 2018-2022, I underwent an additional thirteen surgeries fixing nerve, vascular, tendon, and soft tissue injuries, as well as multiple infections. In this time, I also had three nerve stimulators implanted, attended thousands of hours of physical therapy, and had many infusions and injections / blocks. Since 2018, I have been on crutches for 2000+ days straight due to the ongoing pain.
This year (2023) has been especially challenging in that no surgeries are left to try. I cannot get an elective amputation as it is not advised for my CRPS due to the high probability of it worsening my condition and I cannot go back into the ExoSym at this time due to the state of my CRPS. The stimulators, infusions and injections have stopped helping, and my insurance has limited the ability for me to receive other types of treatment including continued physical therapy.
If you knew me at any point in my life, you would know that I love sports (especially soccer and running), and being active is who I am at the core. I thrive on adventure and always pursued the hardest workout because I truly loved it. My life has changed in many ways due to the pain and I miss everything about it. Pain day in and day out has a way of wearing you down over the years and I've had to fight to stay positive and keep going. I used to be a very happy, vibrant person and I've become quiet and isolated by the pain, just trying to get by. In May, I took a 2 month leave of absence from work due to the pain - it's been a very difficult year. My life consists of walking my (wonderful dog) Duke on crutches, resting, working from home and going to doctor appts.
I never chose a life of narcotics because that's not what I want for myself and truthfully narcotics don't work well for my CRPS. Walking boots are too painful to use, as are knee scooters and the iWalk - trust me I've tried them all. Not one to ever want to quit, I have found myself wanting to, as everything I've tried has yet to work and solutions are dwindling. I miss living life to the fullest. In many ways, I feel like these past several years have been a long battle, one that I always hoped I would win if I just tried hard enough, but as I've found effort doesn't equal results with CRPS like it does in sports. It's one thing to go through a difficult season for a week, a month, a year - but to go on this long is something I would never wish on anyone.
At the recommendation of my doctors and PT, the next step is for me to attend an intensive integrated program for CRPS at Reactive PT in Torrance, CA. Since June, I have been fighting my insurance for approval to go. Unfortunately, they continue to deny. The total cost (program, housing, travel) for me to be able to attend 4 weeks is $18,800. While I never imagined I'd ever create a GoFundMe, I am at a loss for how to financially attend this program, which is really the only option left on the table right now. During the program, I would receive intensive outpatient multidisciplinary treatment daily for CRPS, with the goal to improve my pain and quality of life.
If you've made it this far in the story, thank you for taking the time to read my journey and consider a donation. As I used to say (& am trying to hold on to), "In life we have two choices, we can give up or we can go on. I hope that no matter what challenges you face, you always choose to go on."
Thank you for helping me go on.
I would like to thank everyone from my family to my friends, coworkers and all the medical staff who have been a part of the last 12 years of this leg journey — I am grateful for each of you and the impact you’ve had on my life during this time.