updated OCT. 2021

Imagine being told that you will likely never run again or walk without pain. Then, imagine being given that gift back, only to lose it again and have to climb the mountain one more time. This is my story and this is my mission, to inspire people that no matter what happens in life, you must never give up. Always choose to go on.

My name is Beth Shaver and I am 32 years old. After injuring my ankle in a soccer match in 2011, I endured four surgeries, and subsequent complications from Complex Regional Pain Syndrome Type 2 (CRPS II), limiting my ability to be functional – even walking at all. Faced with the possibility of never running again as well or leading an active life, I traveled the country in search of possible solutions – even to the point of considering elective amputation. I was told by many doctors that there was nothing more that could be done and to consider a life of pain management modalities, but I was unwilling to accept that. I felt determined in my heart that this would not be how my story would end.
In 2013, through a little bit of luck and and a lot of perseverance, I was extremely fortunate to discover the ExoSym (IDEO) through the Hanger Clinic in Gig Harbor, WA – a hybrid prosthetic-orthotic device that provides those with severe lower leg injuries and conditions the ability to offload and stand and walk/run again without pain. The Hanger Clinic team and the ExoSym device truly changed my life and I returned to my active lifestyle with so much gratitude – eventually (2014-2017) conquering several half marathons, a 100-mile bike race, 24-hr adventure and a 120 mile multisport adventure, not to mention dabbling into the world of adaptive CrossFit. The ExoSym truly gave me a second chance and I decided to pay it forward by starting this blog in 2015, in an effort to help other patients find the beauty in their strength and all they have overcome. To dare to live, ExoSymplyAmazing.
Things unfortunately took a turn for the worse when I fell from pretty high up on a rope in 2016 landing on my ExoSym leg, injuring my heel and causing damage throughout my lower leg. Not able to find an orthopedic surgeon who would retake on my case because of the CRPS, I decided to alter my gait and try to avoid letting my heel touch the ground – and I continued on like this for several years in the ExoSym. In that same year, I was injured in a car accident, sustaining head and back injuries, setting me back yet again. (I promise I have good luck sometimes. 😊). Despite these setbacks, I pressed on, determined to never give up.
Fast forward to 2018, the injuries from the fall eventually caught up with me and it became more pain than I could bear – leading to a worsening of my nerve condition (CRPS). Thankfully, I found an incredible surgeon team during that time who decided to take my leg on. From 2018-2021, I have undergone an additional ten surgeries, had two peripheral nerve stimulators (Bioness StimRouter) implanted, and have spent a lot of time on crutches in and out of the hospital getting treatments and many months of intensive physical therapy. With the progress that’s been made in these last nine surgeries, along with the intensive PT and CRPS focused rehabilitation, I am getting closer to the goal of being able to walk and possibly run on my own leg again for the first time since 2011. While this period of life has been extremely challenging, I am choosing to see it as a blessing, as I’m realizing that if I hadn’t reinjured my leg like this, I probably would have never had the opportunity to pursue this type of rehabilitation and surgical care – and for that I am grateful. Even if I had to get there the hard way.
I will always be incredibly thankful for the ways in which the ExoSym carried me to this point, the blessing for having had my life touched by the caring community of #TeamExoSym, and very grateful to my talented surgeon and physical therapist who have devoted their unrelenting effort, expertise, and care to trying to fix my leg, in a way that seems almost unfathomable – and what many doctors said would never be attainable. I don’t know what the future holds, and if I’ll require the ExoSym or not going forward, but for now I’m continuing on in my rehab to see how far I can go. I owe it to myself to give it my best shot.
While I haven’t been able to keep the blog as current as it once was and it has morphed over time, I hope it inspires you to never ever give up. I believe 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, and may you never stop believing for better days ahead. ♥
Note: ExoSymplyAmazing is personal blog and is in no way affiliated or influenced by the Hanger Clinic, and is not something I am paid to do; simply a blog I run in my own free time to help others find hope, inspiration, and motivation.

9 Comments

  1. You are a warrior with great empathy, Beth. Thank you for continuing this blog. I am a possible future exosym patient. Do you have a patient story re ankle/foot end stage osteoarthritis? I have had systemic lupus for 42 years, since I was 21. I need a total ankle replacement plus a fusion but am a high risk patient for surgery due to my kidney transplant 3 years ago. For 5 years, I have been unable to hike, travel, cook, shop, etc due to severe pain and stiffness while standing and walking. Ryan has been too busy to get back to me re my questions re my condition. If you have any information re the exosym compatibility with foot/ankle osteoarthritis, and could send it through my email address, I would be so grateful. I am desperate to regain my life activities and have basically tried every avenue except surgery because of the risks of infection and nonunion, and the possible need for additional surgeries. With admiration, Jude, Canada

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    1. Hi Jude, thanks so much for reaching out & for your kind words. I’m so sorry to hear about your ankle troubles, though I know how hard ankle issues can be. I do have someone in mind for you to speak with – I will reach out to you on your email. Stay strong. ♥️ Your friend, Beth

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    2. Hi I connected with Jude’s comment as I also have a moderate to severe osteoarthritic ankle (from a rollerblading accident 25 years ago). At 55 I am a bit on the younger side for total ankle replacement so my Doctor recommended this amazing brace. I am still in awe that a brace can do what this one does! I am curious if Jude was able to get help? I too love to hike, travel and cook and would love to walk our dog again. I have been so impressed and inspired by Beth’s strength and resilience and also very grateful for this blog.. I am in information gathering stage and would also like to know if I am a candidate for the brace. With gratitude, Lisa – GA.

      Liked by 2 people

      1. Beth, please give Lisa Jones my email address, I’d be more than happy to tell her of my experience. I am fully mobile and without pain.
        Thank you and best wishes to you Beth,
        Jude Clarke

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    3. Hi Jude! Did you ever get your device? I have a tarsal coalition that has led to arthritis in my subtalar joint, and I was cast recently for one (Cornerstone not exosym— essentially the same thing minus the amazing exosym community!) Just curious how it worked with your arthritis. Thanks Beth for all you share, it has made this process so much less daunting and your blog gives me a lot of optimism!

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  2. Hi Beth, I just got my mold/ cast made for my new exosym brace. I haven’t walked in a year and a half due to a terrible car accident that mangled my right leg. They were going to amputate my leg, but my son said, “no” to the ER doctor. I’ve always been healthy & active (hiking, Pilates & Bikram yoga). This has been a tough, and challenging road! I get my exosym in about a month and I’m excited and nervous at the same time. I’m taking pics so, I can share my experience being a woman (late in my years) going thru this. Thanks for sharing your story. I watched your story on YouTube several times before arriving to the Hanger Clinic at Gig Harbor.
    One thing that made me sad, was not being able to wear my fashion shoes. Do you know of any site or business that sells shoes specific for exosym patients? I never wore tennis shoes except for playing tennis , every shoe in my closet had a specific job (e.g. hiking boots, fashion shoes, flip flops for beach, Dansko for work), lol! BTW, I have not been able to put a shoe on my right foot since the accident. Ryan had to slice the right tennis shoe to get my foot into it. But I’m not giving up hope. I hope and pray for your recovery & strength.
    Thanks! Please, Keep the blog going!

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    1. Hi Jacqueline, I’m so sorry to just now be seeing your comment! I hope you are doing great in your ExoSym. I’ve always had great luck with Brooks and New Balance brands because they are wider in the toe box – but definitely check with Ryan as he may have some specific suggestions for your set-up. The ExoSym Facebook group is a great resource as well. I hope you make it back to all the things you love – hiking, pilates and yoga. Don’t give up hope! XO – Beth

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