Thank you for the replies, a lot of good ideas. Here are the responses.
Not sure what approach we will take yet.
I saw a device used at Ballert in Chicago for ALS where the patients head
dips down. It is actually made of spring wire with foam on the outside. It
is basically a circle that is bent in half to go under the chin and against
the upper chest.
I have had good outcomes for these patients using a Lerman non-invasive
Halo. As far as donning independently, my only suggestion would be to
design some kind of sliding mechanism using existing carbon rods and ski
boot buckle mechanisms that would allow patient to don orthosis with her
head/neck flexed then push herself to vertical-you would need to also
consider how to handle pivoting of head/chin component.. Hope this
helps–contact me with questions.
Have you tried the Minerva? It’s a non-invasive HALO with a detachable
mandibular piece (usually for meal times). The headband has silicone
impregnated into it, if I remember correctly. Here is a web link for it.
I would recommend a Custom Anterior Cervical Orthosis. Normally I just use
one neck strap; but your patients picture of her Kyphosis bothers me. I do
not know if it is flexible or not; or if her shoulders are rotated forward
in the picture. You may need an additional back pad; similar to the one’s
made for some Clavicle splints or posture supports with the thoracic pad
that has a “X” type strap pattern on top, with the straps passing through
the pad and coming anterior closing below the breast.
Take the CAD/CAM scan or cast with the patients head in a neutral position.
This should allow her to comfortably observe others around her. It is
better to err with some flexion than extension. Ask the patient which is a
comfortable angle for her then make a note of it. If the patient is laying
down take a view and note that. Polaroid’s are old school but they are great
for reference; or take a digital photo.
Anatomical landscape should include the sub-mandibular area extending 1CM
superior of the full jaw. Capture the cervical trunk running out laterally
2.5CM medial of the Acromion / Capture a full contour the lateral sides
extending along the top of the shoulder, while covering 1.5CM over the top
of the Trapezius… The chest plate area must the breast and exclude any
vertical drop off. The procedure is similar to just covering an anterior
shell style of an abbreviate Minerva Orthosis without the back.
Model Mods: Extend the jaw out anterior 2.5CM. The contour from the neck
following under the mandible should smoothly flow outward and not upward.
Build up any bony prominence for the clavicles, and fill in any voids
between the clavicles and chest if there are any.
Plastic molding: I hand drape over the mold with 3/16th clear VIVAC or DURR
PLEX or whatever you prefer as long as you can adjust it later.
After contact with the cast you can strap the plastic against the cast and
secure it until the plastic is cool. Frame molding is acceptable as long as
your finished thickness is at least 3-4 mm thick.
Finish Trim: Similar to a Mini-Minerva without any chin curb. Please try
with no padding. It normally is very comfortable with total contact.
The only goal is to hold the patient in neutral; the patient should have
full rotation, and be comfortable. My patients after a break in period would
wear the orthosis 16 hrs. a day. *Your patient probably would be more
comfortable with the back pad strap system closing anteriorly.
Just responding to Marc’s listserv posting via you. Granted I am no
practitioner and am very inexperienced, so forgive my terminology (and
potential absurdity). I was wondering if a shoulder harness with some sort
of posterior ratcheting strap, if you will, to keep her neck in extension.
This rigid plastic ratcheting strap (which we have used occasionally for
y’all) would be lighter than a steplock joint and could allow some rotation
of the head if the pt can rotate her head. For the head band, would a
padded piece of Dacron do the trick? Again, pardon my potential absurdity
and possibly lacking terminology.
I had a similar case once and the only new things I can suggest for you is
cotton webbing material 1 to 1.5 ” wide for the headband. Most comfortable
and easily washed.
Make sure it has a Velcro closure for ease of adjustment. I would give
patient at least one extra for
wash and one dry. Add a D-ring at superior portion of upright to pass the
strap through to allow
lateral rotation of the c-spine if wanted. Finally try adding a chin strap
option to keep head band in place.
The step lock joint sounds interesting for adjustable flexion /extension.
Use silicone for the band, one of the pieces left from prosthetic liners.
Works better than anything
Several years ago we managed a patient with a similar condition. Female in
her 40’s, post auto accident. In addition to being unable to support her
head (chin rested on her sternum!!) she could not tolerate mandibular
pressure as all of her teeth had to be extracted. Multiple designs had been
tried without success. Despite attempts to gain control of her skull, her
head simply slipped out of the head support which usually involved some sort
of forehead strap. At the time she was not a surgical candidate due to
other medical issues. I took a carefully molded impression of her head
(similar to a cranial remolding helmet impression) and fabricated a total
contact helmet, split laterally to allow adjustability via compression
strapping and attached this to a halo vest with the standard superstructure.
The adjustable halo superstructure gave us the ability to adjust head
position. It worked!!! BUT as you can imagine, it was extremely cumbersome
to don, and the family had to play a big role in assisting. She used the
device for several months while undergoing therapy and ultimately went on to
surgery. As a long term solution I do not believe that orthotic
intervention is likely to provide a successful outcome. Surprising how
heavy the human head is.
I like your design. I have similar issues with some kids with neuromuscular
diseases. What I have done is to use thin (~1/16″) Polyethylene reinforced
straps on either side of the occipital piece. (I have also done this in 1/8″
Aquaplast) These then fasten with Velcro at the forehead. The PE resists
superior migration, yet is flexible to conform to the head. I have sewn
padding to the PE.
Atlanta Prosthetics and Orthotics Inc.