CTO for ALS type patients

CTO for ALS type patients

Rick Stapleton

10/15/2008

Hello List Serve,

Here are the responses to my query:

In the last 6 months I have seen 3 cases, all with different pathologies
but similar symptoms. All three patients have very weak neck extensors
and cannot hold their head up for any extended period of time. They all
have to eventually hold their head up with a hand. All have been fitted
with various OTS cervical collars without success. The biggest problem
is that they cannot tolerate anything under the chin because they can't
eat, swallow, or talk without a lot of difficulty. The patient I have
been asked to fit is 62 y/o female, diagnosed with cervical stenosis and
general muscle weakness. She can hold her head up for short periods of
time without any assist, but when it comes to walking, reading, and
eating she has to have assistance. She has no muscle spasms or tone, and
does not have a cervical flexion contracture. She has had physical
therapy with no long lasting results. She can't tolerate any sternal
pressure due to open heart surgery and subsequent scarring on the
sternum. Oh yea, did I mention she is also very vain and doesn't want to
mess her hair up, but is willing to try anything, have you ever heard
that one before? :-) My previous patient had ALS and has since died, but
I tried many different devices including the non-invasive halo and I
even custom made my own orthosis trying to use a head band to no avail.
On the gentlemen with ALS the head band would begin to slip within
minutes of him donning the orthosis.

Does anyone have any experience/success with a non-standard CTO?

Responses:

Wireframe cervical collar is not a CTO but is very adjustable to
maximize support while minimizing throat restriction. I've used these
for ALS with generally good results. I've been most pleased with the
headmaster for comfort because the chin sling allows swallowing (
<URL Redacted>.

Tilt wheel chairs also help.

 

An old CPO I worked with did a posterior molded Kydex support, seemed
like it was a premolded plastic from some sort of CTLSO, attached a UE
cable and housing in a U shape with the bottom of the U shaped housing
attached to the proximal kydex posterior to pt's head, free ends of
cable were attached to a band of ALPHA line rwhich wrap around anterior
of pt's forehead.
This worked for his father inlaw w/ ALS. A hat covered the alpha liner,
cable and housing allowed him to rotate head left/right. waist band
countered his neck flexion.

 

I do believe you will with a custom cervical orthosis. I have used it
on pt's 4 yrs of age to 84 yrs of age with no problem. Material
selection is up to you, I have used vivac, uvex, and white foam. It must
have a very good cast to start. Call me for fab. directioins if you are
interested. I have probably done 150 of them.

 

 cd denison brace at sps

 
< <URL Redacted>
etail&itm_id=99904&itm_index=0> headmaster collar available at sps

 

we have had a similar issue at out practice. Our CO used both these
types with some success. There is also another style available similar
to above mentioned; but i could not find it at this time.

 

Maybe one of the non-invasive haol systems might work.

 

i have had similar patients. there is a simple answer that works
well.....i made a wedge out of plastazote (about 3 inches thick) that
reflected the greatest passive extension capapility of the patient. i
then drilled a hole threw it and put a long strip of velstretch through
it so the strap wrapped around and hooked down on itself. the strap is
not visible as it goes under the hair, the wedge, however is. the brace
basically holds the neck up, but the plastazote is soft enough to allow
the patient to chew and doesn't put a lot of pressure on the sternum.
if u needed to i'm sure you could offload the area of the open heart
surgery. hope this helps, any questions, u can call me

 

My best solution is a reclined seating system and a Miami-J collar.
You'll never win a fight like this. It is just a matter of getting the
head balanced over the neck to eliminate the gravitational force, add a
nice cervical collar for limited support. Best of luck!

 

Anyway, for people in wheelchairs with ALS, I have successfully used a
baseball hat with Velcro attached to it and then to the back of the
chair.

No vanity allowed and no L Code available.

 

I have used the Lerman pinless halo on a similar patient with success
and an another pt I used a perfab minerva. Good luck.

 

My experience is similar to yours, ALS and MS. Tried minerva braces and
somi braces without the chin piece. My results were similar to yours as
well.

I have used collars that I have made with a shock attached to the front
of the collar so they could look down when they flexed there neck and
when they relaxed there head would come up. If your interested let me
know

Difficult cases. We have had a few. Best result but not great was a
minerva with forehead band. It, however, would slip. We tried silicone
from scraps of a gel liner but was irritiating to skin. At least
patient could keep head up for a period of time. Custom stuff was a
complete flop. We tried under chin but that was a failure for reasons
you mentioned.

 

We tried an over the back design, I will try and draw a picture in
words. Imagine two molded plastic uprights, sort of like an old
fashioned Taylor design, but molded in plastic from impression of torso,
neck and chin, but extended over the trapezius, fitting close to side of

neck and coming together under the chin like a Minerva. The distal end

behind the back extended down the paraspinal and wider once past the

scapulas to near the waist. Depending on the abdominal shape, we used

a 2 wide belt to anchor it and apply counterforce thru the fulcrum of

the trapezius. Yes, it did get fatiguing to those muscles, but was

pretty streamlined and lightweight. It has to get wider so you can don

it over your head and let it slip down over the shoulder. If her head

is not too protracted and kyphosis is normal, the brace will not have

to generate as much support.

 

 Try looking into what they call a TOT collar (allimed or sammons)

 

I am going to try and start with the wire frame type because of it's
simplicity. If she can't tolerate that orthosis then I will try some or
the more customized styles once I talk with a few of the orthotists
listed above. I really appreciate all of the responses and apologize for
the delay in replying with all the comments. I will let the list serve
know my results when I am finished.

 

Sincerely,

 

Rick Stapleton, CPO

President

Tidewater Prosthetic Center, Inc.

150 Burnett's Way, Ste. 300

Suffolk, VA 23434

Ph:757-925-4844

Fax:757-925-4973

 


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