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!
- Becker Orthopedic: www.beckerorthopedic.com/
- Ottobock: https://www.ottobockus.com
- Fillauer: fillauer.com/Orthotics/index.html
I started wearing the UTX from Becker about a year ago. I wear bilateral stance control braces for severe hyperextension of my knees. Becker has had to made some modifications because of the hyperextension, but they are great and give me freedom that I haven’t had in a long time.
Pamela, I am so happy you are enjoying such a positive experience. Glad to hear there are other FSHD people wearing these successfully. (I actually ended up with a Becker and Ottobock SCO, and like them both.)
Thanks for responding
Kathy
Kathy,
How do regular people afford the $75,000 one by Ottobock? I need to get one for my child with FSHD whom falls a lot.
Friggen awesome. I want to golf again. I’m fighting other physical issues along with FSHD but thank you for sharing!
My brother who was diagnosed with FSHD at age 16 and is now 60 has never gotten good care for his disease process! He sees a PCP who manages any other physical problems but that is it! I feel he could really benefit from the use of these splints! He struggles to stay on his feet. Where could I send him to see what could be done for him? He lives north of Seattle, WA.
Sherry, I don’t know the Seattle area, but assume he would start with his Dr. or PT, as a prescription is needed to begin the process. Good Luck
We suggest he make an appoint with a physiatrist who is affiliated with a neuromuscular or rehabilitation medicine clinic.
I just thought about this a couple of months ago but didn’t do a deeper research. My left legs is really weak and I walk using a crutch (if I dont use it I fall very easily). Do you believe it could be helpful to me? Is it necessary to have a minimum strenght to be able to wear it?
I will talk to my PT about this 🙂
Many thanks for this article!
My name is Sarah and i have FSHD md and it getting worst
What I need to know does the brace work
My legs are weak and I cannot stand but I can use my desk cycle and I exercise this way. Would the stance control braces help me. I need some help in finding the first steps to getting an opinion and evaluation on this product. I live in Barrington, Illinois. Chicago is 30 miles away.
I have severe myopathy (muscle weakness) standing is difficult, walking is nearly impossible now. Stance control KAFO braces like the UTX have changed my life. I’m part of a Mobility Dog Team (he provides the locomotion) and the braces keep me upright. I can walk on flat surfaces on my own and tell my dog when it’s time for him to pull me. He pulls me up hills, stairs, and inclines, but I can manage if there is a hand rail. My answer is yes, Stance Control KAFO Braces should enable you to walk under your own control since you can use a desk cycle. I would recommend doing a trial of an OttoBock C-Brace. It can help you walk by taking the KAFO and adding a motor to it. Becker has something similar, too. But my next brace will probably bee the C-Brace.
Would like to know more about this brace. Can we do measurements ourselves as we are too far from any specialists in FSHMD.
WE WOULD LOVE MORE INFORMATION AND HOW MUCH THESE COST
Our understanding is that this type of brace has to be custom-fitted and also requires some training to use correctly. The cost should be covered by insurance.
How does someone with FSHD afford the C-brace? I don’t see government insurance paying $75,000 for it even though it is life changing and adds to one’s mobility and quality of life. Please tell me how I can afford one for my adult child with FSHD?
How can people afford this it’s may be expensive
She was able to get her health insurance to cover it, but not all policies or healthcare system may be willing to cover the cost.