RE: Bracing for Spasticity/Spasms

February 3, 2008

Hi Brande,

Are you bracing purely for the spasticity or for weakness and stability as

well? If you are wanting to brace purely for spasticity is may not work as well

because if you brace otherwise stable joints, you really will only restrict your

movement. Also it would be worth it to really discuss this with your PT or

Orthotist because if your spasticity is bad enough, you will be constantly

fighting the braces and have to worry about sore legs and skin issues.

Brande wrote:

I was wondering if anybody here has tried any Bracing for their

Spasticity/Spasms? How did it work? The thought of it entered

my mind, so I am looking for information.

What I am seeing is that there are Braces for the Knee for

Spasticity...........however, mine are in my entire leg(s),

including the Buttocks. So, how does that work? How

does it stop the Spasms?

How does this all work with Tethered Cord, especially

active Tethered Cord (meaning still there, still tries to cause

problems). I am kind of thinking that if I tried this, it would

be more like beating a dead Horse, counterproductive.

In a way, it is kind of tricky trying to figure out if this type of

Bracing is for Spasticity, or Spasms, as they are 2 different

things, yet easily interchanged. I have both.

I don't really have any other Bracing needs, just looking for

info in regards to Spasticity.

Brande

mymocha@...

February 5, 2008

Brande,

Sorry for the slow response. I've been setting up a new computer (way too

time consuming) and running my poor kitty to kitty-ICU for the second time

in less than a week.

I have KAFOs. I can't remember if you are a FT w/c user or not, but while I

can " walk " with KAFOs, they are not especially efficient as a means of

transportation. Since I am a T12 para, they do allow me to stand and walk on

a treadmill for about 20-40 min. What that helps with is preventing my

osteopenia from progressing and helps with the tightness caused by my

spasms. It also allows me to get some " real " exercise (most arm bikes don't

really let me get my HR up high enough - walking with KAFOs on a treadmill

sure does and I sweat like a little piggy).

I have not really heard of using braces (HKFO, KAFO or AFO) for spasms,

specifically. For example, I started with AFOs between my 2nd and 3rd

surgeries. I had developed drop foot and spasms. The AFOs (along with

forearm crutches) allowed me to continue walking by supporting my drop feet

and keeping my spasms from throwing my feet in some contorted position that

would make me trip. It just kept them at a fixed 90 degree angle. Since my

paralysis, I was fitted with KAFOs. As I mentioned, while I can walk with

them (if you want to call it that), it is a very inefficient mode of

transportation and not very practical, nor safe. I have to hold myself up

constantly, so I can't cook or carry anything b/c my hands are occupied by

holding myself upright. It is like I have 2 separate bodies, divided at T12.

The KAFOs hold my legs straight so I can move them to walk (I have some

movement and sensation below T12), but its like there is a major disconnect

at T12, so I just don't have the strength to hold myself upright. That is

the best explanation I can give of the experience. Difficult to explain if

you haven't felt it yourself.

But as far as using the KAFOs with regard to my spasms - they certainly

don't prevent them. When I was a good girl and walking 2-3 times a week, I

felt like my spasms improved a bit. But since I have been off my regimen

(and I just finished standing for about 2 hrs), they are by FAR worse. The

reason is that spasms can cause your muscles to become tight (and eventually

develop contractures) if they are not stretched out. So, if you are not

standing, it can be particularly hard to stretch out your heels/ankles, in

particular (those are the muscles that I find very difficult to get an

adequate stretch on my own. I just do not have the leverage to pull them

enough and against my spasms. And I can't pay a therapist to do it for me

forever. Back to spasms and tightness. Since I have been in the chair and

not very consistent with using my KAFOs, my ankles are very tight. My left

ankle will not go to the neurtral position anymore. Well, it will if you

really force it (which takes a strong therapist). Sitting in a chair with

the footplate placed such that you get dorsiflexion will help, but it is not

the same as when you are standing and can use your body weight to stretch

your ankles. Also, my left knee will not fully straighten (we had it there

when I quit therapy in Nov), but after these 2 months of no standing, has

returned to where it was before I went to therapy from June to Nov last

year. The problem was that I developed a very nasty UTI that took 3 courses

of antibiotics to fix and I have a hard enough time staying dry with a UTI,

let alone when I am vertical and have the aid of gravity. So, now I'm

getting back to it, but I have to start all over --- standing and getting

that back before I can start walking again.

So, while I've never heard of bracing used for spasticity specifically (not

that it can't be done, I've just not heard of it), I think it can help

prevent the effects from spasticity (does that make sense at all??) I was

referred by my physiatrist to an orthotist, who fitted me with my braces.

They cast your legs and then make plastic braces with metal " skeletons. "

But, there are better, lighter KAFOs that are made of carbon fiber that I am

going to try to replace my old ones with. My old AFOs were carbon fiber ones

and they were great. The plastic kind are not very practical for everyday

use (as far as for walking). They are heavy and very HOT. Not to mention

they contort any flab on your legs to make your legs look very funky. Its

not very practical to wear them under your clothes b/c you really need some

kind of cloth between you and the KAFO (I know not everyone does this), but

they make my legs sweat so badly (how can your skin breathe with thick

plastic covering it?). So, without either pants or a stockingette under them

(which would make you really hot in the summer to wear the two layers), it

is just difficult. The carbon fiber ones are make by a company called " Walk

On. " Their AFOs were awesome.

I hope this gives you so me info that is helpful. If you want anymore info

about me and my KAFOs, feel free to ask onlist or off.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Brande

Sent: Sunday, February 03, 2008 1:44 AM

To: tetheredspinalcord

Subject: Bracing for Spasticity/Spasms