Broken Plexus (2 of 3): Adapting Off-the-Shelf Orthoses for Long-Haul Limb Support

I’ve worn a lot of orthoses over the past year, the designs of which have varied more widely than I would have anticipated, considering that each one addresses aspects of the same injury. There are soft slings made mostly of cloth and hard braces that incorporate metal and thermoplastics; off-the-shelf designs and custom creations. Some cover as little as half of my right hand; others the majority of that arm. But they all have one thing in common, aside from their shared connection to my severe brachial plexus injury: sooner or later, each one has required (or at least benefited from) adaptive customizations.

“Wait a moment,” you might be thinking, “I don’t have a BPI!” Well, that’s great news. But the utility (and in some cases even necessity) of  modifying wearable supports isn’t limited to my specific injury or the orthotic objects in my orbit. Rather, I’d submit that it’s a function of  time – specifically, how long and how often a given support is worn.

With any orthosis I’ve come to wear day in and day out, there will always be elements that cause discomfort or perhaps even do harm. I’m not out to blame designers or manufacturers for any of this – in fact, for the most part, I’m very grateful to the creators of my various orthoses. But many of these braces, slings, and other things aren’t made to be used long-term. If you wear a simple sling for a few days or weeks, you might not notice any issues. But over time, things wear down (or out) and pain points are revealed. Some problems are best fixed by professionals, but many can be more efficiently addressed with a little troubleshooting and DIY work.

Some of my interventions have been optional optimizations, like adding a sternum strap to secure a sling that keeps slipping or swapping in magnetic buckles on a brace for ease of use. Others have addressed more essential issues, like using velcro to attach a custom pillow between a plastic connector and my back to relieve raw-rubbed skin. So I try to remain ready with a flexible array of strategies and materials that can be used to fix up various orthoses, temporarily or long-term. Even now, a year after my injury, I continue to grow my kit of parts!

Mohr Arm Support: Flexible Flail Limb Sling

Brachial plexus injuries (BPI) vary, but in severe cases, patients (like myself) often present with what’s known as a “flail limb” – which seems to me like a rather Victorian way of saying that the person can’t control their arm (which thus ‘flails about’). BPI sufferers often can’t lift their injured arm away from the body (adduction) or actively bend it at the elbow (flexion). Hanging limply, a flail arm can weigh heavily on the motor-compromised shoulder area above. Thus, in the wake of a BPI, specialized slings are needed to stabilize and protect this region.

I’ll confess to some initial skepticism when one of my occupational therapists first pointed me toward the GiveMohr sling. First, there’s the goofy moniker, incorporating the last name of one of its creators. Plus, their official website looks like something out of the ’90s and describes their product as a “flaccid upper extremity positioning device,” a rather unappetizing word salad. The product pictures are also … odd. But setting my wariness aside, I got one, and it has had a hugely positive impact on my post-injury life.

Critically, this sling is designed to support a non-working arm without immobilizing it entirely. Straps wrap up the injured side, from the hand to the shoulder and then across the back, so that the effort of supporting the flail limb is transferred largely to a working side of the body.

Importantly,  this system is supportive but flexible. When walking, for instance, we count on our arms to swing back and forth – that pendulum effect provides balance our bodies expect while we’re in motion. However, with frequent use, I found the GivMohr to have some key limitations, which led me to a series of modifications.

• First, the shoulder straps had a tendency to slide off when I would sit down or bend from a standing position. I solved this by adding a sternum strap (designed for a backpack) with a magnetic buckle.

• Second, there’s a plastic square in the back (anchoring a crossroad of two straps) — this began to rub my skin raw even with a layer of clothing between this element and my body. One of my OTs solved this by adding a small cushion and pillowcase with sewed-on velcro straps. I had a general idea of what I wanted, but she improved upon that schematic, making it removable so that it can be cleaned.

• Third, two unrelated factors conspired to stress my thumb. (1) A muscle imbalance common to BPI patients rotated my injured arm and hand inward. (2) Nerve damage rendered my hand hypersensitive, making even gentle contact painful. Thus, my thumb brushed painfully against my side with each step and corresponding arm swing. To address this, I created a fairly simple mini-splint out of ultra-soft material, connecting and closing it with sticky-backed velcro. (I can’t even imagine faulting the designer for failing to foresee how a strange confluence of circumstances would create this problem.)

The GiveMohr is great for walking around, and helpful when standing. However, it provides no real support in a seated position. This is where a more conventional-looking sling comes in handy.

Subluxation Sling: Fit to Sit, Stand or Walk

I tried out a number of similar alternatives before deciding on an Össur Formfit Shoulder Brace as my go-to sling for various situations in which the GiveMohr doesn’t work well (if at all), like sitting down. Differences in utility aside, both braces aim to do the same thing: take an arm’s weight off of an injured shoulder and translate it over to find support on the body’s working side. In this case: what starts out as a single sling strap on one’s injured side forks into two: one piece to cross over the shoulder (like a typical sling), and the other to go under the other shoulder for side support.

The Össur sling is really quite comfortable, and it doesn’t cost an arm or a leg. But once again in this case: I found myself frustrated with elements of the design and set about making modifications. Putting the sling on and taking it off requires buckling and unbuckling not one but two plastic buckles — tricky with one hand. So I dipped into my trusty magnetic Fidlock buckle collection, selected a suitable pair of V-Buckles, and took them along with the sling to a tailor for retrofitting.

In many ways, the Össur is the most versatile of my orthoses, able to be worn for a long period comfortably and suitable for sitting, standing, and walking. However, it’s also the bulkiest of the bunch, making it annoying to carry around when not in use. It can also be tricky to manage when layering clothing in cold weather. Searching for something at the opposite end of the bulkiness spectrum, I found a super lightweight, portable, and flexible sling — but its benefits come at the cost of more limited utility and compromised comfort.

Moebius Sling: Backup Looping Strip Option

Last (and likely least) of my off-the-shelf orthoses: the following is a rather cheap and minimal “sling” that is helpful in a limited set of niche use cases. It’s basically a long, continuous padded strap that you can wrap around your body to create a kind of DIY arm support. The Unizooke Immobilizer is not comfortable for all day use, but its portability makes it attractive at times, like: going out to watch a show where you’ll be seated most of the time, and thus want something you can roll up and tuck away with ease.

The Immobilizer’s extremely straightforward design means you can wrap it about yourself in various ways.  The entire padded strap also acts as a ‘loop’ side velcro receiver, to which any matching ‘hook’ side velcro will stick. The hook pieces start out attached to the ends of the strap, but they are modular and can be moved around to wherever they’re needed. One could even cut the entire strip down to a different length.

So, on the plus side, the whole thing is simple to use and to modify. I’ve even used the low cost to justify taking a few of these apart so I can use components in other places. I took some of the modular velcro tabs that come with this strap, for example, and incorporated them into another sling. On the downside, wearing an Immobilizer strip for more than a short while puts pressure on the places where the strip crosses under and supports your limb, which can get uncomfortable quickly. Still. I keep a few such moebius slings as emergency backup orthoses for my backpack and vehicle. I think of them like spare tires – designed to be deployed for short trips in a pinch rather than used for regular, everyday driving.

Custom Braces: Kohlstedt-Modified Orthosis

My favorite brace (functionally and aesthetically) was constructed by specialists at Limb Lamb after being prescribed by the Mayo Clinic’s Brachial Plexus Group. The former is a company that makes custom prosthetics; the latter is a uniquely interdisciplinary collection of experts (including neurologists, neurosurgeons, and orthopedic specialists) with a shared interest in rare and severe brachial injuries.

This custom brace design is based on what’s known as the Wilmer Carrying Orthosis, a support system driven by balancing forces: “When the forearm is directed downwards by gravity, the upper arm is, at the same time, pushed upwards, leading to the head of the upper arm finding its support in the shoulder joint again.” Among other things, it features a button at the suspension point that releases a wire, letting my arm hang limply at my side without removing the orthosis (when, for instance, putting on a coat). Once the left arm lifts the right back up, the wire relocks automatically.

The Limb Lab orthotists are also great creative partners – at my request, they swapped their original plastic buckle for (you guessed it) a magnetic one. After a few weeks of testing, I also had them add a second fabric support strip, connected to the forearm shell and support wire, to provide additional stabilization. This more intensive intervention required drilling two holes through the shell and attaching various connectors, so I was surprised when they did it on the spot!

At the Mayo for a follow-up, one of the doctors noticed the new details and deviations from the normal design. He joked that I should patent the “Kohlstedt-Modified Wilmer Carrying Orthosis” (a perhaps aptly awkward name for a “flaccid upper extremity positioning device.”)

At the Limb Lab offices, they have a wonderful workshop to implement adjustments and mod on the spot. So I watched, learned, and asked questions. I saw other people testing out their own custom fit orthoses and artificial limbs, too, then giving feedback for improvement, with makers iterating on their needs as my team was doing the same with me. The experience was extremely informative, pleasant, and productive. I mention this in large part because if your insurance will support it, working with an orthotist opens up a world of possibilities, especially for recoveries that aren’t well served by off-the-shelf options. Also, I think it’s worth highlighting that even a custom design is going to benefit from design iteration and improvements over time.

K-Tape: Supplementing Wearable Orthoses

Not every physical recovery aid fits in a neat little (proverbial) box alongside other collections of stuff, like: “wearable orthoses” or “workout tools” (even if it literally fits into a neat little box). For example, when I suffered worsening shoulder pain, a physical therapist I was paired with offered up a helpful low-tech wearable option: athletic (aka kinesiology or therapeutic) tape. Defying my existing conceptual “tool boxes,” this new solution expanded my thinking on rehabilitation tools.

Like tension lines on a suspension bridge, strips of tape helped connect areas of my upper arm and shoulder that needed support to parts of my back that could help provide it. The resulting web of overlapping K-tape strips helped redistribute loads to relieve overtaxed muscles and serve in place of non-functional ones. One of the great things about this particular fix is that it can be used in conjunction with other helpful things, like wearable orthoses, supplementing the work that those are doing – there’s no need to pick between one form of support and another. The biggest downside is that taping an out-of-reach area (like my back) requires someone else to actually apply the tape. To handle that, I keep rolls in a few places, including my parents’ house and my partner’s apartment, with people who have helpfully learned to do so!

While a lot of physical solutions related to my BPI have involved orthoses, my experience with K-tape offers a good reminder that finding or modifying a wearable support isn’t everything.

Also: I never would have encountered the stuff if I hadn’t mentioned increased pain to my doctor, who referred me to a PT, who applied tape. All of which is to say: I hope my hacks are illustrative, and suggestions around accumulating materials are helpful, but at the end of the day I’m not a medical expert. You should always consult one of those.

Meta-Supports: Suspending Your Orthosis

At the end of the day, like us, our orthoses need a place to rest, ideally within easy reach (outside of closed drawers or closets). Of the perhaps dozen or so supports I’ve accumulated, two or three are in regular rotation at any given time, necessitating multiple storage solutions.

Personally, I’ve found wall hooks put up in entry rooms or halls to be helpful options. They’re simple to install, don’t displace existing storage space, and most residences can easily accommodate the addition of a few. My cast of currently active supports will doubtless continue to rotate over time, but I expect these meta-supports for hanging slings and braces (as well as my materials drawer!) will keep coming in handy for the long haul.

Internal Needs & Elements of Control

Aside from the direct physical upsides of customizing supports, I have also found psychological benefits to actively thinking through how to optimize orthoses, then implementing those solutions, either alone or with the help of professionals (be they doctors or tailors). On medical leave from work, I had to deal with a lot of physical therapy and just plain physical pain. To balance out the weight of these, I found it essential to occupy myself with projects – particularly ones with added benefits related to pain reduction, everyday comfort, and other aspects of my recovery.

There’s an element of control to all of this as well. Over the course of a long-haul recovery, there are a lot of things over which one has frustratingly little of that. So we control what we can … like changing wearable supports to fit rehabilitation needs and desires, including practical mods, critical fixes, and in my case designing and printing various 99% Invisible patches to stick onto orthoses, too.