Thank you to all who responded to my question. Posted below are the original
question and responses. I agree with the majority that amputation should be
avoided at this time. Thanks again for the great responses-I did forward
them
to the Orthopedic surgeon who appreciated them as well.
Sincerely,
Chris German, CPO
I work closely with a pediatric orthopedist. Today he consulted me on
options for an upper extremity prosthesis for a nine month old boy. The
patient was born with nerve root avulsion’s of C5-T1 with a resultant
flail arm. There has been no amputation at this point. This patient has
seen specialists in both Boston and NYC for nerve reconstruction
surgery. The specialists feel the outcome would not be successful. Has
anyone come across a similar case and if so what was the outcome? The
questions that are most relevant are- would the patient benefit from an
amputation versus an orthosis to control the flail arm? If an amputation
is indicated-what would be the optimal level? Should the parents wait
until the child is old enough to make the decision for himself (parents
are split on the idea of amputation)? How well can we expect a nine
month child to do with a prosthesis? I would appreciate any feedback if
you have worked on a similar case.
Thank you,
Chris German, CPO
Hello,
Just a thought from a fellow CPO, with Peds experience.
I would strongly lobby for Non amputation and nerve transplant/
Sx:/Orthotic management at all costs. For these reasons. !) Obviously
the amputation is permanent, which may be unnecessary because of the
nerve lesion. (proximal shoulder strength??) 2)Nerve root transplants
are becoming more successful with technology, and time is on the side of
this youngster. Psychology of amputation over flail arm??4) If it’s the
non dominant arm the child will function very well, if the amputation is
performed there still will be loss of function because of the
neurological deficits, so the amputation would not solve any functional
issues. Good luck,
A flail arm is better than no arm. As you know, children with one arm
adopt very well even without a prosthesis. If they have sensation, why
would you want to take that away? Also, consider the scoliosis effect as
a prosthetic device does not counterbalance the contra lateral
extremity. There are simple orthotic hinges for this problem which Otto
Bock sells.
If it were my child I would fabricate some type of sophisticated flail arm
orthosis to buy some time. Goals of orthosis would be to help with
balance, hold simple objects, improve self image as patient gets older
and get him use to wearing something. A possibility down the
road would be a BE with switch controlled or myo controlled electric TD,
step lock type elbow joints, rigid cuff, and shoulder cap to keep
shoulder from dislocating. I will be curious to see what other prosthetists
suggest.
For a nine month old the best treatment is a reversible one. An
amputation is not reversible. I think the best thing to do is wait. A
nine month old will adapt well with one arm,
Well it is interesting to note that the 9 yr old boy having such
problem, i dont thing it is better option to go for amputation at this
age, any externaly sourced uper extremity orthosis would be
ideal?,amputation could probly need above elbow level, then we need to
go for powered prosthesis instead, powered orthosis would be better
choice.well expecting others opinion in this regard.
Advice is simple. Accepting it is rare.
So with that in mind, I am coming from over 41 years experience in this
field.
I have been a Practicing prosthetist- Orthtist workin with Physicians at
Northwestern University, Stanford University and U.C. San Francisco.
Please consider for the youth and parents.
1) Once something is removed, it can never be replaced.
2) Is there adequate sensation in the affected limb? If sensation and
circulation are present then it is viable and non threatening.
3) Advances are being made everyday in Upper Extremity Orthotic Support.
4) Advances in stem regeneration will take place during this child’s life.
4) Even the most simple slings or supports can be applied until the
patient can decide for self. You can get creative here.
5) An amputation would provide less function than a flail arm since
there would be no ability to provide positioning. It would be
disfiguring forever and offer false hope to parents and child.
I think you see wher I stand from clinical experience. Ihope this is of
help to your patient, to you and the physician.
Nine months is pushing it for any cognoscente function. Somewhere between
12-24 months seems to be more likely given the developmental stage of the
individual child.
I would not suggest amputation. Why not make a “prosthesis” that supports
the extremity and perhaps provides grasp with an orthosis but that adds body
powered and cable transmitted movement like a prosthesis. The child will
have some function and the option to make the surgical decision can be
delayed until a time when perhaps the technique id perfected or ore
options exist.
THE RESULTS FOR AN AMPUTATION AND PROSTHETIC FITTING, OR A FLAIL ARM
BRACE WOULD
ALMOST BE EQUAL FROM THE STANDPOINT OF FUNCTION. AMPUTATING AT THIS AGE
MAY ALSO
BE PROBLEMATIC. TRYING TO FIT A PROSTHESIS THAT THE CHILD AT 9 MONTHS
WILL NOT
BE ABLE TO USE.
THE CHILD SHOULD IN MY OPINION,BE AMPUTATED AS SOON AS POSSIBLE.LET
HE/SHE GET
USED TO ONE HANDEDNESS EARLY ON TO HELP ESTABLISH FUNCTIONAL USE OF HIS
SOUND
SIDE. AT THIS AGE THE CHILD WILL ADAPT VERY QUICKLY. AT AGE 3-4,FAMILY
CAN SEE
HOW THE CHILD FUNCTIONS AND SEE IF THERE MIGHT BE SOME INTERST IN A
PROSTHESIS.
THE CHILD SHOULD PART OF THE DECISION MAKING PROCESS.MY GUESS IS THAT
WHEN HE
BEGINS SCHOOL,THAT THERE MAY BE AN INTEREST. FUNCTIONALLY, HE MAY BE
ABLE TO DO
MOST ACTIVITIES ONE HANDED AND PERHAPS USE A PROSTHESIS FOR SPECIALIZED
TASKS.
THE ABOVE ELBOW AMPUTATION WILL ALSO HAVE TO HAVE THE SHOULDER FUSED. THE
ATROPHY OF THE MUSCLES AROUND THE SHOULDER,WILL NOT BE ABLE TO SUPPORT
THE JOINT
WITHOUT SUBLUXING OR COMPLETELY DISLOCATING.THIS WILL ALSO HAMPER
PROSTHETIC
USE. I HAVE FIT SEVERAL ADULTS WITH THIS PROBLEM.THEY ARE ABLE TO USE A
BODY
POWERED PROSTHESIS BUT ARE LIMITED.
It would be interesting to see what other issues this child has. An
avulsion at
birth would indicate a fairly traumatic birth. Is anoxia an issue. My
experience has been that there is no good answer to give the parents. Any
functional prosthesis would require at least an intact and functional
shoulder –
otherwise we would fit with a shoulder disarticulation. The usual issue
is that
the arm ends up caught in a door etc so amputation is more for
protection of the
whole child rather than for any function outcome. I know that is not
much of an
answer. I would leave the arm alone for now but get him into an orthosis to
protect and to suspend from the shoulder to relieve further distraction
of the
shoulder complex.
I also specialize in Upper Extremity Prosthetics. Outstanding
presentation on your case. Not sure if you are familiar with the work
Dr. Todd Kuiken is doing at Northwestern with a techinique called
“Targeted Muscle Re-innervation”. TMR results are proving significant
for proximal level amputations. Recommend you envision when the infant
is 20 years down the road. If TMR develops into what we all hope it
will, why couldn’t the same technique be used in your patient? I also
have an Orthopaedic Surgery background of 18 years from a previous life.
If you would like to discuss the TMR technique, please feel free to
contact me. We can get you comfortable with the information to discuss
it with your docs.
Patience on the amputation decision is the best advice until ALL options
presently available and future developments are explored.
If nothing else, let’s at least get your peds ortho doc exploring this
as an option. Perhaps he or she may even collaborate with Todd Kuiken to
explore your patient as a potential candidate for the procedure. Our
soldiers are having some remarkable results. You could be the networking
clinician between the two. No pediatric cases of TMR are known to me as
of today. Dr. Kuiken would be able to answer that one.
