Help a Nurse: Support for Exosym and increased mobility

Some of you know my ankle situation, some the whole story, some partial and some are new to hearing about it. It’s become such a way of life for me that it’s not something I talk all that much about anymore. This is a long read so if you want to a shorter version skip to the last four paragraphs.

The winter of my senior year in High School I broke my ankle sledding, breaking it in 3 places, including both the tibia and fibula. The surgeon told me I shattered one of the bones (comminuted fracture.) I spent 3 days in the hospital, had surgery and walked away (no wait, I didn’t actually walk) with new hardware in my ankle. Recovered with crutches and PT and for the next 15 years or so remained pretty active including down-hill skiing, cross country skiing, hiking, biking and even did an Olympic distance triathlon. I would have pain, but I was young and the pain was worth the price to do these things. I had two other surgeries during this time on my ankle but minor – hardware removal and bone spur (caused by joint damage) removal.

By the early 2000s the pain was pretty constant and intense, and my ankle kept getting what I call “stuck.” Basically, I wasn’t able to point or flex it without manipulating it and putting the full weight of my body on it. Once I would get it either flexed or pointed then it would get stuck the other way. The goal was to keep it stuck flexed as that’s easier to walk on and I was doing floor nursing (LPN) at the time. I remember I spent a couple days with it stuck pointed and had to walk on my tippy toes the whole time until I went to the ER, and they put me back on crutches and referred me to a new ankle surgeon.

Upon seeing my new ankle surgeon, he told me I had an end stage ankle, and I needed an ankle fusion. He also told me that there was an option for an ankle replacement, but I was too young as at the time they were only lasting 10-15 years. They were not redoing them when they failed as there wasn’t enough ankle joint left to work with, and he said the next step when it failed would be amputation.

So, I picked the fusion, but also had just broken up with my ex of 9 years and moved out of the house we’d bought, so I waited a year and half to get it done as I needed to save up on PTO and money. I stalled the surgery with an ankle brace and multiple cortisone shots, but eventually they stopped helping.

November 6, 2006, with PTO saved up and my rent paid 2 months in advance I had my ankle fusion, spending another 3 days in the hospital and leaving this time with an external fixator. I was told it would be 6-12 weeks of recovery before I would be weight bearing again, except my fusion failed. In March of 2007 I had a second fusion which also months later wasn’t fusing. Luckily before surgery I’d traded in my manual stick shift for an automatic car and gotten a left foot accelerator installed so I could drive. I’d also picked up a 2nd job as a home health nurse in addition to the hospital prior to my surgery to save up some funds. I wasn't able to return to working at the hospital in 6-12 weeks like I'd planned but about 8 weeks post up from my first surgery I was able to go back to my part time home health job. The family was very understanding and helpful and would do any lifting that was needed and then I would hop up the stairs on one foot and hop around the client’s room doing care as needed. Luckily it was night shift and the client was asleep most of it so I was able to spend it with my leg elevated on a recliner in the room responding to monitors as needed.

Finally, after 51 weeks (one week shy of a year) of complete non-weight bearing I was told I could start putting weight on it again. It’s hard for me to explain what spending a whole year on crutches is like. I remember watching TV and seeing a character pick up a glass of water and carry it across the room and being so envious. I would fantasize about what it would be like to do that and carry something while walking. I rejoiced and was so happy and thankful to be able to begin the ditch the crutches process. It was still another 6 weeks from then before I was able to fully weight bear on it, and another month before I could do it without the walking boot. I spent almost a year in PT.

After I was weight bearing again, I went back to floor nursing and finished up my RN and moved to working in the ER. Immediately after I started walking again, I had new intense nerve pain on the outer portion of my ankle. Prior to surgery the pain had been mostly joint pain on the inner part of my ankle. I had two-day surgeries in the next couple years that followed. One removing a screw that was thought to be backed up against the nerve and the second an exploratory surgery removing part of a nerve. There was minor relief, but neither really resolved the pain, but my ankle wasn’t getting stuck anymore and I was able to ambulate, so I took it in stride.

Since the fusion my activity has been much more limited. I haven’t been able to run or jump since as my ankle doesn’t allow it to move that way. I did do the Big Stair Climb in Seattle months after getting of crutches as walking upstairs is much easier for me than going down. I also did a bunch of bike rides, including Courage Classic over 3 mountain passes, a century ride, Tour De Blast, and many more since my ankle tolerated it better than walking. So, I did get some good years out of the fusion.

However, the last 5-10 years my ankle has gotten progressively worse, even smaller bike rides are hard to tolerate and cause a lot of pain. Right before the pandemic I had to move away from bedside nursing and 12-hour shifts and moved into the hospital transfer center as I couldn’t tolerate that much time on my ankle. I currently am doing school nursing, but this is for the schedule more than my ankle, but I do spend considerably less time on it then I did as an ER nurse.

I did have some relief after moving away from bedside nursing and 12-hour shifts and bought myself some time before having to deal with my ankle, but the last year and especially the last few months have been bad. It is getting stuck again often. It’s also caused me to fall and stumble on it as I go to stand up from sitting (where it had gotten stuck) and it doesn’t support me, and I lose my balance expecting it to support me. I even had a student at my school in turn around when I stumbled to check on me, and I’m supposed to be the ones taking care of them! I’m avoiding walking on it as much as possible as the pain afterwards is crazy intense. Example walking home from the kiddos school which is 2 blocks up and 3 blocks over is causing extreme pain which is keeping me up at night after, all night. I’ve been up in tears to 5 am some nights with nothing helping. The pain lately is more intense that it was pre-fusion in 2006☹. Also I want to interject it feels really weird to be complaining here to everyone about my pain, but I guess this is kind of the point, to let you know why I’m here on GoFundme.

Which brings us to the Exosym. I feel this is the very best option for me. I have slowly been giving up more and more physical activities over the year until lately it’s difficult to even walk blocks or into grocery stores. Although ankle replacements are more successful and last longer than they did in 2006, I am not at a point in my life where I could do weeks or months on crutches again. Being that I’ve already had 6 surgeries on my ankle and poor outcome of my fusion I don’t want to consider another surgery when there is a simpler solution that will allow me more function.

But what is the Exosym: “The ExoSym is a hybrid prosthetic-orthotic device that is custom-made to your individual needs and goals and uses optimal alignment, positioning, off‐loading, and control to help restore mobility. It is a dynamic brace, sometimes called a dynamic exoskeleton.” Lucky for me the clinic is in Gig Harbor, Washington as people fly from all over the world to get fitted for an Exosym as it’s the only clinic where it's available. It comes with an intense training regimen and per all reports, reviews, predictions and users of it I will be able to participate in intense physical activities including jumping and running. Never in my wildest dreams did I think this was something I would be able to partake in ever again as it's been over 20 years since I've ran or jumped.

This is where you come in. Because medical costs are what they are in the US I take to crowdfunding like so many others. Most insurance companies don't cover the Exosym however the insurance I'm with has been recently known to partially cover. I am still waiting for that approval so my fundraising goal includes the part I will have to pay if insurance covers. There may be another out of pocket $2201 if it's determined that I need the knee section as well. I will also have additional shoe costs are there are only certain shoes I can wear with it, and I will need different size shoes for each foot, which will mean double the cost unless I find a way around that! I may update the amount if I find out insurance isn't covering or I need the knee piece.

I have taken little M camping every summer except for this one and skipped out because I knew I wouldn't be able to tolerate walking on uneven ground at and around a campsite. He's 8 and we are both so excited that I'll be getting the Exosym and can resume camping and many more outdoor activities with him in the many years ahead! He's also super excited that I will soon be able to race him!