Tuesday, July 28, 2020

Getting KAFOs/ Long Leg Braces after Spinal Cord Injury

Today I'd like to share information about the process of getting KAFOs (Knee-Ankle-Foot Orthoses).  As usual, nothing here reflects a medical recommendation, professional opinion, or endorsement.  Note also that I receive no money or compensation for any of the products named.  I write about my own experiences and hope that they encourage others to keep moving forward.  Please seek advice from medical professionals and physical therapists. 

With that disclaimer, if you want to know more about KAFOs, where to start?  If you're like me and you have a spinal cord injury or similar neurological condition, or if you know someone who does, you may already have passed time surfing the internet.  I spent hours doing general research about leg braces.  There are a lot different types of bracing to help with therapy and functional walking.  HKAFOs (Hip-Knee-Ankle-Foot Orthoses) extend up around the hips and include a belt or back bracing, KAFOs generally run from mid-thigh down, and AFOs (Ankle-Foot Orthoses) are used for bracing below the knees.  (To learn more about types of leg braces and to see pictures, click here.)  Within these categories, realize that braces provide varying levels of support.  They may be sturdier for users with very little muscle function, or be relatively lightweight, intended to offer supplemental support for toe droop or knee buckling.  Newer models of some of these braces are mechanically assistive with springs, or feature robotic stance control that responds to muscle movement. 

Over time, I've tried HKAFOs, KAFOs, and AFOs of multiple types (thank you, Hanger!), including stance control C-braces, polypropylene plastic and carbon fiber AFOs, thermoplastic heavy-duty KAFOs, modular KAFOs (my name for the Allards Combo brand), and (H)KAFOs with a hip belt and the Up and Go bracket system for gait stabilization.  I consider myself blessed to have had the opportunity to experiment with various kinds of bracing.  Sometimes braces have to be fitted directly for the user and cannot be used on a trial basis, or are too expensive and rare for clinics to have on-hand.

To schedule an appointment with an orthotist, I had to have a doctor's written approval (a scrip).  Insurance wants the document to show that braces are medically necessary or beneficial for your health.  I talked with my insurance provider directly and asking about leg braces as authorized Durable Medical Equipment.  I would suppose that spine centers or specialty clinics devoted to SCI rehab have standard ways of doing all of this. 

The first visit at the orthotics clinic was an assessment of the injury and its specific impact.  This stage was mostly answering questions.  What muscles were functioning?  What was my level of independence at different tasks, such as sitting up or leaning over?  Did I have any walking ability?  I was using a wheelchair for mobility at the time and had a little hip function.  When my knees were blocked or locked straight, I could take small steps.  Information like this helps determine what bracing is viable.

For me, the results were almost a disappointment.  My request for braces was nearly turned down because my walking ability was very poor.  Fortunately, I had a great advocate in my orthotist.  If it hadn't been for him, the braces would never have happened.  (If you know much about SCIs, you know that opportunities can easily be shut down.  Don't be discouraged and don't give up.  Be persistent and pursue all your options.)

Fitting for leg braces was a separate appointment.  All I had to do was show up.  The casting process was fairly straightforward.  It just involved having measurements taken and being still while the clinician created a mold of my legs.

 


The molds were used to fabricate custom braces for use at home.  I picked up the braces  about a month later, approximately two weeks after the one-year anniversary of my accident.  Since we had been able to keep my body used to being upright, I did not have to go through any stages of readjusting, such as worrying about blood pressure problems or potential blood clots.  Getting used to the braces mainly meant wearing them for longer periods of time each day: an hour one day, two hours the next day, four hours the next, and so on.  By July 4, I could walk down the local trail just enough to view fireworks while standing.  It was a long and triumphant way from the hospital bed where I had been exactly a year earlier.  Well worth it!


Obviously that isn't the whole story about long leg braces.  There is much more to say about adjusting to them and using them for daily function, but I hope that these short insights will help others who are looking into leg braces.  Please contact me or leave a comment below if you have any questions!

Thursday, July 16, 2020

Classics Column: "Not Your Virgil's Sinon"

Guest Column:

Not Your Virgil’s Sinon: The Greeks and the Man Who Tricked the Trojans

Thank you to Alex!

Image: Detail from The Procession of the Trojan Horse in Troy by Domenico Tiepolo (1773).  Public Domain. 

Wednesday, July 15, 2020

Headset for Hand Function

"Gaming headset design" meets "3D printing" meets "EEG" meets "Functional E-Stim" meets "therapy at home."  Everything here meets to accomplish a single goal: building a headset to encourage improved hand function after spinal cord injury.  The brainchild of PhD student Nina Petric-Gray (University of Glasgow), this headset device is being developed for users to work with from home.  3D printing, FES, home therapy, and gaming headsets (for VR rehab) have all been themes of my previous posts, so the headset caught my attention for many reasons.  Petric-Gray's invention is a creative synthesis of a lot of technologies.  Incidentally, for readers who want to know more about the headset, it's currently under trial in Glasgow. 

Tuesday, June 30, 2020

Two Articles from June

From the busy month of June, there are two stories I'd like to share today.

First, the encouraging recovery of Jacques Matellus, who suffered a cervical spinal cord injury in 2019.  A year later, he is walking again, expecting far more progress ahead!  

Second, the recent injury of Officer Shay Mikalonis.  Officer Mikalonis was shot in the head June 1st and has been diagnosed as paralyzed from the neck down.  He is on a ventilator and soon to begin rehabilitation.  His injury is extremely serious; please remember him and his family.

Please keep both of these men and their families in your thoughts and prayers in the days ahead. 

Friday, June 19, 2020

Sensation and SCI

Sensation after spinal cord injury is complex.  Every SCI is different, and in many ways, feeling and sensation are a testimony to the amazing intricacy of the central nervous system.

What do you physically feel after SCI?  It truly varies from person to person.  Some people have no sensation and no movement or muscle function, others have complete sensation and no movement, and yet others have no sensation and full movement or at least some ability to stand or walk.  Personally, I have a mix of sensation and function.  It's relatively little of what anyone else might call "normal" sensation, and more of what you might call "deep" sensation: noticing pain, the discomfort of a big wrinkle in a pant leg, or pressure on a bony part of the knee, for instance. 

An interesting aspect of sensation is how much you notice it when it's gone.  I have a much harder time walking without seeing my feet.  This is because the body subconsciously relies so heavily on feeling.  (Proprioception is the term for your body's awareness of where it is and how it is positioned.)  But if you have ever heard people say that they knew what had happened as soon as they suffered a traumatic spinal cord injury, it's true that you can tell the difference before and after injury, and it can be in an instant. 

Questions or suggestions?  Please comment below!

Saturday, June 13, 2020

Video: About KAFOs

If you'd like to know more about what knee-ankle-foot orthotics are, how they work, and how they are worn, this video is for you.  More to come about both KAFOs and AFOs.  Questions or suggestions?  Please comment below!