Yesterday I called my mom on my lunch break and we made the final decision to go to Las Vegas. I’ve been wallowing around the depths of my insurance provider’s website and benefits packages and CPT codes for the last week trying to figure out how much they would cover if I was to get a pair of Helios custom orthodics.
I don’t have orthodics, and when I peruse CMT message boards, or see new doctors, I seem to be the only person who doesn’t own a pair. Orthodics are a type of foot and ankle brace that are used to mitigate the symptoms of a whole host of disorders. They’re often clunky and of a standard design. When you get a pair, you buy them off-the-rack so-to-speak, already made. To fit them to a specific foot, padding is often used, which wears quickly and don’t leave lasting support. I’ve used minor bracing and cast equipment before - especially after surgery - but I always and without exception have issues with rubbing and blistering on my left foot.
My left food had been through hell. It has a torn lateral ligament, (one unsuccessful surgery to correct it), and severe supination as a result. In 2011 I had another surgery to mitigate the supination, which included a modified FDL transfer. I say “modified,” because it is a procedure the surgeon developed based on FDL transfers, but with a completely different goal. The tendons in my three smallest toes were cut and reattached to the tendon that pulls my foot to the left. Because my nerve signal to the muscle that curls my feet are not affected by CMT, I can now pull my foot out to the left, (an action which CMT has destroyed in my right foot). This lets me shift my weight inward to mitigate the supination. My left heel was also shaved down because years of walking poorly had misshapen it. It is also the site of a nerve biopsy, which leaves most of the skin on the outside of my foot numb to the touch. When I have rubbing or blisters, I often don’t know until I see the blood.
Honestly, it might sound remarkable that I can walk on it at all, but its my left foot’s history, its odd gait and turning, as well as its propensity for blisters, that gives me real pause when considering an orthodic. But the Helios struck me because they were not of a standard design - they are molded to the individual foot, along with silicone padding, not to mention they are anything but clunky metal leg braces. I gasped to the first time I watched a patient walk with them.
When I daydream about a pair of these orthodics, it easily brings me to tears. It’s things like walking at a normal pace, having normal balance, being able to look around me and not having to keep my to the ground for snags, not feeling like my feet are giving out after a few blocks, thinking I’m going to fall sooner or later. It’s a daydream of sheer relief in the ability to be mobile.
I ended up crying yesterday, I could not help it. I was afraid to put the deposit down on an appointment with Ortho Rehab Designs, which makes the Helios, because of the sheer monumental cost. I won’t say the number, but it significantly more than my current student loan debt. But here was my mom, saying “Allison, if insurance pays for some of it, that’s great. But even if they don’t pay for any of it, we will.”
I cried out of sheer gratefulness and a sliver of relief. My parents once offered to mortgage their house to send me to college. Here they were again, picking me up long after I was old enough to do it myself. But the fact is, I cannot do it myself, and what would I do if I didn’t have them to fall back on in the hardest scenarios? I feel incredibly lucky.
So I called Ortho Rehab and made my appointment. I fly out Aug. 9 and return Aug. 15 with my new legs.
