One of the first questions new patients, parents, and caretakers ask me is “How did you find your specialty?”
Like most clinicians I know, 10 years ago when I began graduate school, I found myself only interested in working with prosthetics and people with amputations. The field of prosthetics is filled with shiny metal pylons, articulating feet, and various custom-made sockets to hold onto the limb. Let’s call it the art of creating a limb for someone by literally filling in the gaps; that is what fascinated me.
Honestly, I was hesitant when I first came to Cornell after my prosthetics residency in 2018. It was all orthotics, all the time. Gone were the days of creating limbs. I had to switch my mindset – instead of building limbs, how do I accommodate a limb that isn’t functioning as it should?
I had the honor and the pleasure of learning under the great Ken Cornell, CO, FAAOP. Most people know Ken for his work in Charcot Marie Tooth Disease. A select few know Ken for his devotion to pediatric patients with complex medical needs.
At the start of my orthotic residency, Ken introduced me to his nearest and dearest clinic – New England Pediatric Care (NEPC) located in Billerica, Ma. NEPC is a long-term care facility and day school for children who are medically fragile. Each resident must be GMFCS IV or V (gross motor function classification system), have two or more skilled nursing needs, and meet specific developmental criteria. Truth be told, I fell in love quickly with the residents, the rehab staff, and most surprisingly, orthotics.
After a few years going to NEPC weekly, I was given the opportunity to restart a clinic at Hogan Regional Center (HRC) in Danvers, Ma. I readily agreed. HRC is the Department of Developmental Services headquarters for the Northeast Region of Massachusetts as well as a long-term care facility for adults with developmental and intellectual disabilities. They also offer outpatient orthotics, wheelchair, shoe, and dental clinics to the area’s group homes.
Both facilities are filled with individuals with complex medical needs requiring equally as complex custom orthotic management. This is where the fun comes in! No two patients are ever the same due to varying muscle tone/spasticity, forms of communication, secondary diagnoses, and support systems. Their custom orthotics require out of the box thinking and a strong knowledge of normal and abnormal anatomy. There are often trials, errors, and countless learning opportunities.
One thing holds true:
The use of custom orthoses for minimally ambulatory and non-ambulatory individuals is an underutilized tool.
Custom ankle foot orthoses (AFOs) and knee ankle foot orthoses (KAFOs), are two lower extremity brace types. For the medically complex population, AFOs allow for improved wheelchair positioning, protection of feet from injury, and preventing leg deformities such as contractures and wounds. They can also reduce pain at dislocated joints with accurate corrective forces, reduce spasticity/tone with proper modifications, and greatly improve stability from the ground up. KAFOs in the non-ambulatory population can allow for supported standing during the day but also maintain knee extension overnight. When possible, passive standing is a crucial form of alternative positioning as it assists in orthopedic benefits such as hip development, increasing bone density, and maintaining range of motion. It also provides gravity assisted GI functions, cardiovascular and respiratory health benefits, and even social benefits by being eye-level with peers.
Spinal support is also often required for patients with complex medical needs. Neuromuscular scoliosis and hypotonia require customization of a thoraco-lumbar-sacral orthosis (TLSO) to reduce deformities which are progressive in nature. A custom TLSO works to reduce scoliosis and maintain an upright trunk by reducing kyphosis, or forward flexion. This in turn can improve GI and respiratory function by reducing abdominal load and increasing thoracic volume for the lungs to inflate.
Upper extremity orthoses and protective helmets are two areas which also require customization. Although not as common as spinal or lower extremity orthoses, this equipment can be the most unique. Upper extremity orthoses are used to reduce deformities and allow for as much functionality of the hands and arms as possible. Protective helmets on the other hand, as they are titled, are a little more self-explanatory; individuals with seizure disorders and self-injurious behaviors need protection. You’ll have to trust me when I say no head is simple!
At Cornell, I am grateful to be able to spend on average 8-10 hours per week in our modifying room. There I get to personally design and make every patient’s custom orthoses; this is the art, the crafting, the expertise. To make a brace from start to finish reinforces positive outcomes as I can form direct correlations from modifying to the finished product. The hard truth is no brace is perfect at delivery. The fine-tuning continues throughout the lifespan of the brace. Something changes eventually, necessitating adjustments of the orthosis.
But I digress.
In the end, I answer the question “How did you find your specialty?” with “I worked hard to find what patient population brings the most joy into my life.” Each day I hope to bring a loving heart to someone in our society that is looked upon differently. I want to make someone’s day a little better, life a little more comfortable, and medically a little less “complex.”
~ Alicia Tripoli
