Help Alix Save Her Ankle & Mobility: Urgent Surgery Fund

Hi friends, fam and folks,

For whatever reason that brought you here, even if it's just morbid curiosity- thank you for taking the time to read my story about my big ol’ ankle. It's one that many know parts of, but few know in totality. It's extremely difficult for me to accept that things have come to this, asking for help online- but know that I only do so because of how dire the need is. <3

Along this painful journey there were many tears, meds, pain, and fear. Losing my mobility in this way at 30 was not something I could have ever imagined in my wildest nightmares. I still wake up and think I dreamt the whole thing until I go to put my foot down. But between all the appointments and surgeries, there has also been a lot of compassion and laughter (once I stopped crying long enough lol). I could not have managed this long without the support from Cameron or from others closest to me (you know who you are). They have kept me upright and laughing even at the worst of times. And if you know me, you know how much I value the latter. Thank you to all those who have visited, checked in, listened, and offered loving words in the last 3 years- you mean absolutely everything to me. Thank you for not forgetting about me.

Most people don't know about my injury or the extent of the disability that followed. I have been pushing through the pain for 3 years to give myself the most normal life possible, but I'm exhausted and the joint is destroyed so it's time for a change and chance at a better quality of life. I am always an open book so if you have any questions or similar stories to share- I'd love to chat.

Due to my upcoming surgery, Cameron and I made the last-minute decision to elope to Scotland in December 2024. We wanted to create vivid and warm memories to carry us through what we knew would be an incredibly difficult year. Behind every beautiful photo you’ve seen, Cameron is holding my cane or holding my arm- keeping me steady as we explored. He really has quite literally lifted me up throughout this entire experience. Thank you for all who have offered support of this choice – it was a difficult decision to change our wedding plans, but entirely worth it. We will celebrate later. :)

Right now, I am managing. I limp through my days in excruciating pain. Ibuprofen- sponsor me? It has taken a long time for me to accept things as they are and the path ahead, but I am resolute in my determination to truly walk again one day. Though even through immense trauma, there is palpable gratitude. Gratitude for my life, my leg, and those who love both just as ferociously as I. If there is any support you can offer, kind words, visits, or otherwise- I am forever gracious.

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(Also, for those who don’t wish to read on – the very short (TLDR) version is:

- my ankle was destroyed in an accident. (above photo after original surgery)

-I’ve had 4 surgeries so far and have no range of motion, am completely bone on bone (arthritic) with torn tendons and extensive nerve damage.

-there are no good options at my age to save my ankle, so I am proceeding with a procedure called Ankle Distraction Arthroplasty (ADA) where I wear an ex-fix for 3 months among other things.

-the surgery is at HSS with a world-renowned surgeon, however he is an out of network provider and I am needing help to cover ADA + a future brace to hopefully give me my mobility back

-I love you thank you)

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To make a very long, painful and complicated story a bit shorter, I'll try to just share the basic medical details. Even so, I must warn you- I am wordy, and the story is long.

Almost 3 years ago I experienced a freak accident that completely altered my life, and my mobility. My right ankle was shattered, the fibula was broken into many small pieces- comminuted beyond recognition. The lowest part of my tibia that makes up the medial malleolus was snapped off. The back of my tibia was also broken off. I came to have urgent surgery in a small-town hospital to repair the break. I had no idea, even when I had my imaging done before surgery, how complicated my injury was. It was originally classified as a ‘trimalleolar’ fracture- a fracture involving breaking 3 bones in the ankle joint. I woke up from that surgery with no sensation or movement from around my shin downwards. The physical and nerve pain was unbearable. My ankle/foot was completely paralyzed. The surgeon promised me that in a year from now I'd be good as new, so we didn't question that mentality for a long time.

I went through the initial normal few weeks of the broken ankle healing process, but I continued to have no movement or sensations. Weeks later when the splints were removed, it was found that due to the paralysis, my tendons had contracted, and my foot could not be placed on the ground flat. This, only recently in March 2024, got mildly better but I still cannot put my foot flat on the ground, nor move it side to side and I have less than zero dorsiflexion- my ankle does not bend. My toes had also contracted and were painfully bent, all of them hammered. I saw many different doctors during this period, all over the state and country trying to find answers. I found out, 6 or so months later, that I had experienced "mild/moderate" compartment syndrome after surgery, that was not caught despite matching all the symptoms, on top of the break. This is a rare occurrence and can be fatal or cause amputations, so I consider myself very lucky in this regard. I also learned that my break was also a ‘pilon’ fracture because my articular (where the cartilage lives) was damaged in the break. This means my joint was irreparably damaged and the likelihood of arthritis occurring was almost guaranteed. The compartment syndrome had also caused so much swelling in my ankle that it was compressing/crushing several nerves, likely causing my paralysis and paresthesia. There were several things at play, and my journey continued searching for answers to solve the puzzle.

I went on to find a surgeon to do my 2nd surgery- nerve surgery to try to save the nerves from further damage. The surgery was difficult but considered a success, the nerves were decompressed but several too badly damaged to fully recover. It took 1.5 years to see the full benefits, but about 65% of my sensation came back (although I have since lost more due to a torn tendon pressing on my nerves) and part of my motion but due to the other issues in my joint – it was hard to tell how much. Unfortunately, due to the return of sensations, I was painfully aware of my ankle deformity and felt like my ankle was constantly in a vice. One silver lining is that the surgeon went on to become a trusted ally and guided me through my medical decisions. He was not able to save my ankle in the way that he hoped- but he continues to do everything in his power to help me succeed.

A month later, I had my 3rd surgery, to remove some hardware and have a tenotomy (cutting tendons) on my first and second toes because they were so painfully hammered. Due to the procedure, those toes are no longer able to bend. A few months later, I attempted to live my life again. I was still walking on the toes of my right foot, going to PT 3x a week, and experiencing tons of nerve/physical pain. I had not driven for over 6 months, barely had taken any steps on my own and I needed to take a year to just be a human again. I spent 2023 working, spending time with family and friends, going to physical therapy like it was my job, and limping horrifically. This was also the year we got our new dog Merle- the highlight for sure.

Unfortunately, my hope was short lived- only a few months into 2023, new pain started. So, between trying to be a human again and many doctor appointments - we found that due to the way I was walking (right foot not flat) I was wearing out my tendons and my bones. When you can’t dorsiflex your ankle, you overcompensate which puts unusual strain on everything. By the end of 2023 it was determined by several other surgeons that I had several torn tendons, and my ankle was riddled with arthritis. I also could not move my ankle in any direction due to bone/tendon issues. The only suggestion was to fuse my ankle- this would fuse me at 90 degrees with zero movement. There are also ankle replacements, although I am far too young for that – the technology is still evolving and risky - the life of the joint is very short. I couldn’t accept fusion as my only option at 30 years old.

In March of 2024, I had another surgery to remove more hardware and debride the joint. After this surgery, I got closer to putting my heel on the ground which was miraculous itself. This bought me some time, but ultimately things regressed again quickly. My left foot began having issues from the way I was “walking”, as did both my knees and hips. I flew to see more surgeons and get more opinions on options. Somewhere along the way I found a girl online with a similar case to mine, and she directed me towards a Facebook group for Ankle Distraction Arthroplasty (ADA). This group was brimming with people like me who couldn’t accept fusion, replacement or amputation as their only options. Many had found a surgeon at HSS (Hospital for Special Surgery) who performed ADA. ADA is not new, but it is not regularly utilized in normal course of treatment for arthritis. Particularly because the procedure involves wearing an external fixator on your ankle for 3+ months (basically a cage on your foot) which is essentially voluntarily torture.

The way ADA works is that the bones are pulled apart by wires on a metal frame around your foot and ankle, this allows the bones to stop rubbing against each other and attempt to heal. Stem cells and microfracture are some of the treatments used in conjunction to encourage a faux cartilage to grow (essentially scar tissue- you cannot regrow cartilage, much to my dismay). You wear the frame for several months, while slowly making adjustments to allow for more joint distraction – and in my case – tendon stretching and hope your body does you a solid and gives you some joint space back.

I flew to New York and met with the surgeon and continued to meet with him several other times before confirming that this was indeed my best option to save my ankle and hopefully be able to bend the joint again one day. ADA does not damage the joint but can hopefully buy me time until better replacements exist when I’m older. This surgeon does not take insurance so the road leading to this decision has been difficult (& expensive). I decided to commit to the procedure, and I have been battling with insurance ever since. I am expected to have my surgery on Feb. 27th in Manhattan, if all goes according to plan. My current (nutshell) surgical plan involves cleaning out the joint again, lengthening my gastroc muscle (to hopefully get dorsiflexion while in the frame), distracting the joint, injecting stem cells from my hip and wearing the frame for 3 months or so. In my case, we will hope the tendons heal- if not I will have to address them with a different surgery. Then I have surgery to remove the frame, and a long recovery/physical therapy journey ahead of me to keep any progress. There is also an option for a brace to take the weight off my ankle should the need arise later in recovery. Full results are expected within 18 months. There is no guarantee of any of this, it will be up to my body to do right by me. After, I’ll have to baby the joint- no running, jumping, hopping, skipping etc. But I haven’t been able to do any of those things since before my accident and it’s a small price to pay to keep your foot and have a renewed shot at mobility.

And if you made it this far, go ahead and blow yourself a kiss because I’m your biggest fan. Thank you <3