Contributor: Kathy Senecal, Cromwell, Connecticut
As a wearer of a stance control brace for 3 years, I became aware that I have not yet met another individual with FSHD wearing one. After doing a little research, there seems to be a lack of information and/or access, resulting in this type of brace being underutilized.
First developed in 1989 by Nils VanLeedam, PhD, of the Netherlands, the stance control brace is a full leg brace (KAFO: knee-ankle-foot orthosis or SCO: stance control orthosis) that allows the knee joint to lock and unlock during walking, providing stability, safety, and range of motion. This style of brace became available in the US in late 90’s to early 2000’s, so although it has been available for about 20 years, this proven technology is considered relatively new.
There are approximately ten styles of SCO (all but one being a full leg brace), available through the three main manufacturers, as well as seven mechanical models covered by insurance in the USA. Each manufacture provides a trial unit for the patient to assist in determining a proper match.
The first question one may have is, how do I know if this would benefit me? One indication is falling, walking with a stiff knee for fear of falling, making unhealthy compensatory movements, turning sideways to go down a hill, and noticing other behavioral changes that are limiting your access to activities in the community.
The process begins with an evaluation by your doctor or PT who is familiar with bracing options. You will need a face-to-face appointment with your physician, as well as a prescription for insurance purposes.
If you are already working with a physical therapist, the process may begin with the therapist evaluating you for a stance control brace. They will look for appropriate range of motion, hip strength, and other elements that would indicate whether bracing is a viable option.
Physical therapists have basic training in braces, but stance control, because they are not commonly used, require additional training. It is also important for the PT to have knowledge, experience, and familiarity with FSHD. If you are not working with a PT, the process should begin with your doctor evaluating you for a stance control brace.
Once bracing is prescribed by your doctor, and the patient is interested in pursuing that option, the next step is with an orthotist, trained specifically in stance control orthoses.
There are specific elements that help the orthotist select the type of brace that is best for you. Some of those include, strength and weight of the patient, ability to move the hip, cognition, occupational and environmental needs, and willingness to work with a PT to achieve the best possible benefits from wearing a KAFO. The orthotist then does further evaluation to select the best brace for your needs.
Once a brace is selected, it is custom-made for your leg. Following a fitting and any possible adjustments done by the orthotist, collaborative team work begins with the patient, PT, and orthotist.
These braces are mechanical devices and don’t walk for you. Once established in the brace, the PT and orthotist will work with you for gait training, functional activities, learning the mechanics of the brace, and problem solving. This is not a simple process, so it is very important that a knowledgeable PT and orthotist work in tandem with you to ensure a positive outcome.
I can personally attest that the effort is well worth it. Once I got the hang of walking with this device, some of the positive results include: less fatigue, stability, confidence, the adjacent joints (ankle and hip), operating in a more normal fashion thus allowing a better gait, the ability to do more, and just the freedom to get around in an easier way. Using a pole/poles to help with balance, this comfortable brace has become a natural part of my everyday life.
I cannot stress enough the importance of a competent, collaborative team to ensure success, and encourage you not to shy away from the length of the brace. The web sites of the three manufacturers are included below if this is of interest to you. Each company is happy to receive inquiries if you would like guidance in finding the right team to help you achieve your walking goals.
Best of luck, and Happy Trails!