Re: DIfficult case- PFFD

Re: DIfficult case- PFFD

Vikki A. Stefans

Thanks much for all the comments. Yes, it would be hard to mistake this
vivacious little one for a patient- she is as active as can be and healthy
as a horse. Les clearly has a wonderful relationship with her. And yet
I do view orthotists as medical professionals. Unless professional
means only consicentious, knowledgable, competent, and caring, I think many
of us professionals are too professional sometimes. Anyway, BLTN I hope,
here are the responses, which I will have a chance to review with Les when
I see him tomorrow in Helena, I hope- and perhaps pictures and x-rays may
be forthcoming also. Best regards,

Vikki Stefans, pediatric physiatrist (rehab doc for kids) and working
Mom of Sarah T. and Michael C., aka <Email Address Redacted>
Arkansas Children's Hospital/ U of A for Medical Sciences, Little Rock
...and EVERY mom is a working mom! (OK, dads too...)


Reply-To: <Email Address Redacted>

thanks SO much for not referring to the young lady as a patient

while many of the prosthetists on the list are more concerned with us
knowing our place, and their subsequent self-aggrandizement and quasi
graduation to medical professional and negate the damage it does to a
person, it will make a very big difference in how she sees herself as she
grows up - as a person, and not as a patient with no choices or voice in
her life.

as a lifelong amputee - it took a LONG time for me to take control of my
life due to so many people in my amputation circle using those patronizing
and demeaning terms and the subsequent personal treatment you get when you
are seen as an object and not a person - as a child especially, it's
difficult to develop when so many are referring to you as an object.

Every time someone in the industry leaves those terms out of their
references to us, it helps the entire amp community.

Thanks again.
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From <Email Address Redacted> Fri Aug 27 22:15:22 1999

Hi Vikki - I have to admit that I have been less that impressed with some
of the work that comes out of the Shriners hosp. in Chicago. It seems to be
more than a bit backward sometimes. Their statement regarding her inability
to use a knee unit flies in the face of the nature of children and their
ability to do almost anything they want to do. I would agree about the four
bar knee. I really like the proteor four bar knees sold by DAW under the
trade name of Geri-Lite. The french manufacturer does not consider these to
be geriatric knees but that is how DAW has chosen to market them. Anyway
have your prosthetist there look at the stability 1 knee. It is probably
a little long but it is lightweight and the DAW chills knee is junk.
Unfortunately there aren't too many other options. It is probably too late
but stabilizing the knee join would be helpful. The older kids I have seen
with unstable knees have had more trouble controlling the prosthesis than
did those who had a good knee fusion. Socket fitting is tougher too.


Ted A. Trower C.P.O.
A-S-C Orthotics & Prosthetics
Jackson, MI, USA

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From <Email Address Redacted> Fri Aug 27 23:28:04 1999

In this case I don't have a reason why no knee joint. I have a HD at age
three he was told that he would not get a knee until age ten. I thought it
was one of the stupidest things I hear, and the parents thought so too.
If I were going to put a knee on a kid it would be a Total Knee from Century
XXll, this HD could go step over step down stairs, and he even played
football.
Now is the time to start planning what will be needed when she is fully
grown, and taking small steps to get to that goal.
That's all for now.

John G. Russell Jr.
15 Ardmore Ct.
Pleasant Hill, CA. 94523-3109
<Email Address Redacted>

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From <Email Address Redacted> Sat Aug 28 23:05:09 1999

    I have worked with PFFD in the past. Something that may help- if I
correctly under stand your letter- Would be a joint and thigh lacer type of
set-up. It sounds as if her knee on the involved side is good with usual
ROM. Using a ship's funnel type of design for the thigh section my help
with her abducted gaite. Also, by allowing her knee to flex while
ambulating(involved side BK joints) she will have better control with the
prosthetic mechanical joint. This combination on the prosthesis may sound
strange; it does work[bk joints and prosthetic AK knee].
    Any photos that you can post, would help in further designing for your
patient's prosthetic design.
Respectfully,
Robert L. Hrynko


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From <Email Address Redacted> Mon Aug 30 00:21:08 1999

Have you checked out the website specially for PFFD's? Sorry I don't have
it at my fingertips.

My preference for a socket is somewhat the same as for all AK's using the
ischial-ramus containment design and going rather agressively with the
medial wall to prevent lateral shifting. I presented this 5 years ago at
the ACPOC Meeting here in Vancouver. I do have a video on this fitting
technique.

The choice of knee and foot are not as critical as the socket design is.
Depending on the general activity level of the patient, use the same
criteria as you would for anyone else.


Tony van der Waarde CP(c)
AWARD Prosthetics
<Email Address Redacted>
www.amputee-online.com/award
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From <Email Address Redacted> Mon Aug 30 15:16:49 1999

i am a pediatric prosthetist and i will try to discuss some of your issues
below. having also not seen the radiographs, the foot and ankle and
exactly what is going on at the hip, i write in generalities based on the
kids i have treated and watched grow up over the last 15 years.

> Just saw a lovely young lady, a very active grade schooler, who had a
> Symes done for her PFFD at St. Louis Shriner's...without a knee
> fusion...and was told by them she would never be able to use a knee joint
> in her prosthesis. I did not have x-rays available, but she has a fairly
> short femur, I am thinking just about 4 inches or less hip to anatomic
> knee, no hip pain and good AROM.
>
> However, a local prosthetist has fit her with a wooden prosthesis, very
> simple suspension, plastic socket that is using some of the available
> anatomic knee flexion to shorten the limb slightly,

this only shortens the limb in stance, especially if the suspension
depends on a syme type suspension at the distal end. during swing, even
with a proximal belt type suspension, the hip will traction and lengthen
the prosthesis overall with the weight of the prosthesis (if she is a
typical Aitken c or d).

>plus has a friction
> knee with a little offset above the end of the Symes to shorten a little
> more. She has a Child's Play foot and probably gets a little energy
> storage fucntion out of it, but tends to keep it all abducted and stay up
> on thhe toe.

if you start to look at your TKA alignment lines, you will probably see
that she is doing this to maintain knee extension. these kids have no hip
so cannot weight bear through their distal limb without getting a lot of
socket migration. they need to have continuous ischial contact during
swing and stance to have the prosthesis be stable much like a transfemoral
amputee.

then with ischial weight bearing in mind, look at your TKA alignment.
that will get her off of her toe

>She is not getting all the flexion out of the system that
> she could

takes a while for them to use flexion. it takes more energy/concentration
for them to walk using the knee, just like the RGO kids who walk with a
swing through gait when they want to go faster. she will use it
eventually.

>and overall it is still a significantly on the long side...but
> she certainly likes it better than things she had before nevertheless.
> She and her family are not all that bothered by the knee length being
> different in sitting (Symes side is long)

when you do growth studies, you can see how much the sound leg will catch
up by the end of her growth. this may be why they did not fuse the knee
YET, as the proximal tibial growth plate is still being preserved. if she
has a 4 inch femur at this age, that's pretty long and puts the weight
line of the prosthesis quite anterior. despite the prosthetic knee being
too low, i try to mold the anatomical knee and hip in extension to get the
prosthesis under the COM for better knee control, consistent length of the
prosthesis through gait. it also adducts the prosthesis since the hip is
abducted when left to flex.

>and the anatomic knee flexion
> seems to be giving her a bit of compensatory lordosis she does not need,
> so my suggestion is to decrease or eliminate it, and increase the offset a
> little more.

probably, but you don't always need surgery to do this.

>At least a four-bar knee would make sense, we think.
> Durability and function are a lot more important to her lifestyle than
> cosmesis.

if you have room it might be nice. probably not as durable or economical,
but it might help with her use of the knee. still need to take a good
look at the instantaneous knee center when evaluating the alignment as all
4-bar knees do not have the same stability.

> It is beyond me why she did not have either a turnaround or the Symes
> *with* a knee fusion, and why anyone ever thought she could not use a
> prosthetic knee...any further input or ideas most welcome.

there are a lot of complications with a turnplasty so young with repeat
surgeries, also the growth issue mentioned above. can't answer your
prosthetic knee question you'll have to ask them. maybe they meant using
her anatomical knee joint with prosthetic knee joints. i have a client
who had septicemia and has about 10 cm of femur to his knee joint and i
put outside hinges on it, but he used to have a regular hip joint prior to
the septicemia, so my musculature and position is more normal.
turnplasties are pretty regional and the debate goes on and on about when
to fuse the knee, but this is out of my prosthetic aquarium.

sounds like the family is a good family to work with though, that says a
lot. you are discussing some good issues with them.

Ramona M. Okumura, CP
Lecturer, Division Prosthetics Orthotics
Dept. of Rehabilitation Medicine, #356490
School of Medicine
University of Washington
Seattle, WA 98195-6490 USA
<Email Address Redacted>
FAX (206) 598-4761