Long leg braces

[reifers]

My son has ab appointment next week to be fitted for "long leg braces". He is C7 incomplete sensory/complete motor. He has not had any leg movement. The therapists at Shepherd say he has very good upper body strength and decided to try him on these braces. He was able to hold himself up and "hobble" (as he called it) for about 10 feet. The braces will be used for exercise only. Has anyone ever used these? They told us they cost about $10,000 and that a lot of people end up putting them in a closet because they are so much trouble. Please give us some input!! Thanks.

[juliez]

Go with the braces. Yes, I have braces in my closet, but those braces proved to my therapists I could use a standing frame and a platform walker for walking short distances. Yes, they are a great deal of trouble, but they lead to better things. Remember they are for exercise, not everyday use.

Julie Z
C 5/6. 10 years post injury

[SCI-Nurse]

In my clinical experience, I have never known any person to persevere at walking with no functional leg muscles. It is very intense exercise to ambulate in long leg braces and would be contraindicated in older people because of the cardiac burden. Other options for exercise include arm ergometers and (especially good) hand cycling. A hand cycle may cost around $3,000 but it gives a person things that they can do with friends and family--going cycling together, whereas brace walking is a solitary and very demanding exercise.

As to standing frames, I have only a couple of patients who continue to use them. But I know they make a big difference in quality of life to a number of people.

I'm not sure who's paying for the braces, but a hand-cycle and a standing frame would probably be a better investment long-term.

RAB

[etexley]

I was injured 3 years back, a T5 ASIA A (complete.)

I use my KAFO braces daily. And I do seem to improve at walking over time. The improvements that I make reassure me that Im moving towards walking all the time.

[etexley]

Incidentally, I completely agree with Spinal Nurse regarding standing frames...or STANDING.

Unless I enlongate my intenstine and eat something, my bowel programs don't work right. If you don't stand, your bones bone resorb calcium and you'll get osteoporetic. And another side affect of this is more proteins in your urine and a higher risk for kidney stones.

[reifers]

I failed to mention that my son has recovered motor function back to T1. He has good hand, tricep and bicep function. He also is continuing to recover sensation on the sides of his chest and abdomen. He has a standing frame (Easy Stand 6000) already. He transfers with no problem to any surface and drives a car that has been modified with hand controls. His accident was 8-13-02, so it has not yet been 8 months. I want him to have every opportunity possible. We have medical insurance that will hopefully pay 90% of these braces. They have paid very well on everything else. Any comments are welcome. Thanks.

[krajaxa]

Hubby has a pari of those, has been using them since april 2001 (two weeks post his accident). He loves to get on them and just stretch out if nothing else, at one point last year he was able to walk up and down our long driveway, which is about 200 yards overall. Since it's getting warmer, he has started to take them out a little bit more. It definitely helps his bowel routine...

According to his SCI doc, more you do it, better you get at it and you don't even need all the leg muscle. It's hard on the upper body since you have to support the body weight... But it's worth it...

... and the insurance paid for 100% of their cost.

[Curt Leatherbee]

I know a guy (Harry who is the director of Shake a leg) and who is around the same level as myself (t-4 complete) was extremely good at walking on long leg braces and canadian crutches, but for some reason just totally gave it up and now uses the Wheelchair, for a while he refused to use the chair and would only walk.

I also have a good friend who is a t-7 and also is very good on the leg braces.

I have used my braces for about 21 years now and think it is a great thing to be able to stand up and hop around every now and then. I am currently having new leg braces built as I out grew my old ones as my legs have nearly doubled in girth due to intense FES bike training.

I would recommend leg braces to anyone c-7 and below if you have the drive and physical stamina to do such a thing. It is good for the body to be up and standing rather than sitting all the time.

10 grand sounds like an awful lot for a pair of long leg braces, mine are costing about $2500.00. Are they Kafos? Mine are just straight long leg braces with a locking mechanism. They are plastic on the bottom half with steel supports.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[janacv]

Ours were 13,000.oo We paid 3600.00, insurance paid the rest. I had the swing phase lock long leg braces, Yes, they are in the closet, not because i gave up, but because i kept at it, and at it. It was extremely difficulty, but in my case, i have only improved. I say try try try. My first therapist didn't recommend braces because "they were too physically taxing", second therapist said to give it a shot. I'm glad i did.

[wildwilly]

Long leg braces (KAFOs) have a huge range in cost ($2000 - $15,000) depending on the hardware and material used. The braces have come a long way over the last 5 years allowing many individuals to stand/exercise or ambulate more safely and efficiently. One has to consider several factors when deciding on the type of brace (injury/injury level, age, experimental procedures...). It is true that a majority of individuals will find ambulation with long leg braces to exhausting for functional ambulation but I disagree with the manner in which this factor is used to discourage individuals form trying. There are numerous benefits from standing whether you use a standing frame or braces (not just functional ambulation). I always ask which one will/can you safely use on a daily basis at home.
Wildwilly

[mr_coffee]

I agree with Curt, i highly recommend you do persue the leg braces. It sure feels nice to get up and hobble around rather than just standing static in a stander. Plus it will make him feel alot better i think. When i was "hobbling" I felt like a new person, it wasn't functional but i loved it.

[ButtMonkey]

Go for it for sure. I have them (and admittedly they are in the closet) and even if I don't use them very much, its SO nice to know they're there if I decide I want to. And when I got up in them the first few times, the feeling was amazing. The feeling alone is worth every bit of it. It is pretty physically demanding to use braces and I almost no one uses them insead of their chair, but just being able to walk around the house a little is great. The view is so different from 6' in the air instead of 4!

[kelrod]

Keep the braces and use as often as therapist suggest. It is important to stand and walk with the braces as this will help deter any atrophy that may develop.
The braces are much better than a standing frame.

[fescueblue]

Braces are what you make of them, and what you deem necessary to use them for to accomplish things in your life. Most of our friends see our family as unique, 2 disabled, 2 able-bodied of which one is a Special Ed Teacher. I can tell you that through our experiences with KAFOs, and HKAFOs; they make a functional daily difference whether or not we are standing or not. Our daughter has used HKAFOs for walking during therapy for 15 years, the rest of the time its KAFOs for positioning and posture. We would have put her in chest-hi HKAFOs at 3 years old, had we known that it would have helped prevent her from having 12 hours of spinal surgery at age 7. (conservative physician) I used HKAFOs for about 12 years, we both do a swing-thru gait; it gets you there faster! Now I use KAFOs for the same thing, when your legs are 38" long, its nice to be able to control the dead wood... While it might be difficult at first, there are advantages. Find a good knowledgible therapist, a great orthotist; and make sure the 3 of you are on the same page. As for the costs; I've spoken to my orthotist about what some members are being asked to pay. We can't figure out if its the gold-plated uprights, the fine Italian leather, or the SUNOCO plastic that costs $15,000 dollars!! Whatever these people are making truely doesn't even cost half as much, especially if they are using the Medicare Rate Chart. Buying braces is like buying a car; get what you need at a price you can afford from a respected, honest Ortho Lab; but don't keep them in the garage!!