Help Erin Get a Life Changing ExoSym Prosthetic Brace!

Hello everyone!

As many of you know, over the past year I have had quite the experience with my ankle. I have end-stage osteoarthritis in my right ankle, of unknown cause. I never had any major accident or injury—my problems began when I was 18, and from ages 22-28 I have had 5 surgeries. In November 2023 I had a subtalar fusion, which is a major surgery to fuse separate bones in the ankle to eliminate pain, at the expense of limiting some motion. After 3 months, it was discovered the surgery was a complete fail, with less than 5% healing. In February 2024, I had the fusion repeated and after months of waiting and wondering, it has only healed 50%, which has caused ongoing issues of severe pain with weight bearing. I also had an arthroscopy surgery in September 2024 to address pain in the front of the ankle, which revealed advanced arthritis in the main ankle joint, a separate issue from the fusion. I've gotten multiple opinions from different doctors, and generally 50% healing is right on the line of attempting another revision or waiting longer to see if things improve. Each attempt at a fusion revision reduces the chances of success and I was told if I were to have a 3rd attempt at the fusion, the recovery would be around 1 year with no guarantee of pain improvement and potentially worsening the pain.

Over the last year with my 3 surgeries, I’ve gone 6 months non-weight bearing, and because of this I have lost a lot of strength, coordination, and stability in my right leg. I have been doing physical therapy twice weekly since June, where I have made some progress with strength and coordination but unfortunately not with the pain. Physical therapy is definitely beneficial, but since it has been 10 months since the revision and 6 months of PT and the pain is not noticeably improving, it is likely due to the persistent nonunion.

The pain I’ve been experiencing has been severely limiting me in all aspects of life. I have extreme difficulty standing for more than 15-20 minutes at a time, cannot run most errands by myself, and have difficulty standing to do household tasks. Currently I walk with a cane in public since I can’t do steps, inclines, or walk on uneven ground without an assistive device. I lost my job in June due to being off work for so long with my surgery complications, and I have struggled trying to find a job because of how limited I am physically.

Over the last year since my original fusion I have been part of an online group of others with fusions, including those with ongoing issues like myself. Some of these people have mentioned a device called ExoSym and highlighted how much it has improved their life. The ExoSym is a hybrid prosthetic-orthotic brace that offloads weight from the ankle to help people with severe ankle issues. It was originally created to help veterans with serious injuries avoid amputation, and it can drastically improve mobility and reduce pain.

Because this is such a specialized device, there is an application process involved to see if your condition would benefit from the ExoSym. I went through the application process and found out last week that I was accepted into the program! The ExoSym program is only located in Gig Harbor, WA, which means anyone receiving the device needs to travel to that clinic to have the custom fitting and physical therapy/training associated with it. People come from all over the world to be in the program, so I figured I would be put on a long waitlist but the clinic already scheduled me for the end of January!

The reason I am doing this fundraiser is because this all comes at a large cost—The device, fitting, and training is $9500, and I was warned early on that insurance does not cover these costs. On top of that, I will have the travel expenses of going to Washington for 10 days, as well as getting custom shoes and supplies for the device.

The whole reason I decided on the fusion in the first place was because I wanted to improve my life. Unfortunately I had very rare/unexpected complications occur with the first fusion, but over this last year I have been doing everything possible to help turn the situation around—2 additional surgeries, 6 months of physical therapy so far, and 3 months of using a bone stimulator so far. I really think this ExoSym will be the light at the end of the tunnel for me and could be a life changer in terms of getting back to work, daily activities, and recreation. I’ve kept saying this whole time that I didn’t want to settle until I've exhausted all my options, and I’m so grateful I’m being given the opportunity to get the ExoSym. It will be a challenging training process from what I've been told, but I am eager to do whatever it takes to be successful with it.

I am very appreciative of any support—Thank you so much for your consideration and for following me along on this journey!

-Erin :)