Houdini with Neurofibromatosis, Summary of Responses
Mark Seibel
Description
Collection
Title:
Houdini with Neurofibromatosis, Summary of Responses
Creator:
Mark Seibel
Date:
8/31/2005
Text:
Thank you to everyone who took the time to respond!
The original query:
I have a 15 month old patient with a diagnosis of Type 1
neurofibromatosis. He has a pseudoarthrosis of the tibia near the
midway point. Pt has good ROM at the knee and ankle with no muscle
tightness. The orthopedist has ordered a jointed, custom molded kafo
with a PTB type anterior tibial shell.
This is the second kafo I have made for this pt. He was fit with the
initial orthosis at the age of 5 months. This orthosis was a one-piece,
plastic, posterior kafo with an overlapping, one-piece, full length,
foam-lined, anterior shell(including the foot). This worked fine for
about a month and then as pt became more active, he began sliding his
heel out of the orthosis. This quickly got to the point where he was
able to slide it completely off. I added a posterior aliplast foam
inverted U above the heel. This helped, but did not stop the problem. I
finally added a distal velcro ankle strap just proximal to the ankle.
This strap entered the posterior shell through a slot posteriorly and
looped around the ankle and exited from the same slot. It was then
attached to the outside of the shell with self adhesive velcro. It was
long enough so that when applying the posterior section, it could be
loosened to allow the foot to be slid through the strap without needing
to thread the strap into the slot each time. This worked fairly well,
but the pt. still managed to slide his heel up. It did, however, prevent
him from sliding it all the way off!
Before I begin this second version, I thought I'd bring this to you all
for suggestions. Does anyone out there have experience with this type
of patient? If so, I'd love to hear from you. I am requesting ideas on
brace design(anterior shell over posterior shell vs. anterior into
posterior, length of the anterior shell, foam lined vs non lined, type
and thickness of plastic, joint type, etc.) and suggestions for keeping
the heel in place.
Thanks in advance for sharing your knowledge.
Mark Seibel CPO
==================================================================Responses:
Ask the orthopedist what the patient's prognosis is. Does he think the
pseudoarthosis will resolve (you said tib, fib also?). If so, when?
Would the doc, would you, prefer the KAFO over a long, ideally Ertl,
TTA
for the rest of your life?
==================================================================
Hi,
I have indeed had similiar patients, and recommend 1/8th copolymer with
1/8th liner posterior cuffs KAFO with a 1/2 wide dacron IRD strap
securing the foot into the heel. If the heel is not secured all the
time, his translation shall result in incongruency in the joint
placement and a fracture potential. I use unlined 1 or 2mm low density
polyethylene interiorly overlapping tongue to keep the tibia and femur
secured and maintain good circumferential pressure (like a Sarmiento).
I have used tamarack free motion pedi joints and Becker infant free
motion aluminum knee joints.
Good luck,
==================================================================
Use a molded SMO that interlocks with the AFO section of your KAFO.
OR, attach the KAFO to a hightop or 3/4 top shoe and rely on the laces
to
keep it in place.
==================================================================
Here's my two cents worth: I see no need to cross the knee joint for a
mid shaft problem, nor do I see a need to inhibit a perfectly good
ankle. I would make a bivalved free hinged ankle PTB style afo, pad only
the anterior section, and make sure it is an absolutely intimate fit. I
have followed two children with this problem from birth, both are now in
their 20's. You can make it a PTB style but I think you're fooling
yourself if you really think they unweight the pseudoarthrosis. The real
benefit to making it in this fashion is to have as long of lever arms as
possible to prevent angular deformities at the defect. The best place
for management of these problems is the Center for Limb Lengthening in
Baltimore MD, DR Paley has probably seen more than anyone in the US.
Good Luck, nice case presentation. You will enjoy a patient and a family
like this. Working with a person from childhood to adulthood is one of
the most enjoyable aspects of my 30 years in the biz.
==================================================================
Never had this problem before, but I'm imagining the possibility of
placing a piece or pieces of alpha liner material into the anterior
shell section and possibly the posterior section. The shell would need
to key in to prevent shifting, but I would think the traction of the
liner material against the skin would prevent shifting of the brace down
the leg. OWW sells sheet material of their liners and they have a
velcro compatible version (spirit fabric).
Good luck.
==================================================================
I did have an infant several years ago with the same presenting
diagnosis
and condition. I made one rigid KAFO and two jointed KAFOs very
similar in
design to yours in the span of about 18 months beginning at age 3
months. I
never encountered the difficulties you faced, and she did well with
the
orthosis on. She did, however, manage to break her leg three times when
the
KAFO was off (in the pool and in the bath). This ultimately led to the
very
difficult decision by the parents and the pediatric orthopedist to have
an
elective amputation of the limb. She is now an excellent prosthetic
user
with much greater mobility. I don't have any specific suggestions
regarding
keeping the foot seated other than making sure you have excellent
contours
around the calcaneus. It seems to me that as a toddler, your patient
should
lose some of the baby fat that can make fitting and infant so
difficult.
The anatomy should become more pronounced and the decreased tissue
should
give less room to wiggle. I hope you get some more detailed
recommendations
from others, but best of luck in any case.
Kind regards,
==================================================================
please go to www.PHATBRACES.com for full information
==================================================================
IMPORTANT WARNING: The information in this message (and the documents attached to it, if any) is confidential and may be legally privileged. It is intended solely for the addressee. Access to this message by anyone else is unauthorized. If you are not the intended recipient, any disclosure, copying, distribution or any action taken, or omitted to be taken, in reliance on it is prohibited and may be unlawful. If you have received this message in error, please delete all electronic copies of this message (and the documents attached to it, if any), destroy any hard copies you may have created and notify me immediately by replying to this email. Thank you.
********************
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If you have a problem unsubscribing,or have other
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OANDP-L is a forum for the discussion of topics
related to Orthotics and Prosthetics.
Public commercial postings are forbidden. Responses to inquiries
should not be sent to the entire oandp-l list. Professional credentials
or affiliations should be used in all communications.
The original query:
I have a 15 month old patient with a diagnosis of Type 1
neurofibromatosis. He has a pseudoarthrosis of the tibia near the
midway point. Pt has good ROM at the knee and ankle with no muscle
tightness. The orthopedist has ordered a jointed, custom molded kafo
with a PTB type anterior tibial shell.
This is the second kafo I have made for this pt. He was fit with the
initial orthosis at the age of 5 months. This orthosis was a one-piece,
plastic, posterior kafo with an overlapping, one-piece, full length,
foam-lined, anterior shell(including the foot). This worked fine for
about a month and then as pt became more active, he began sliding his
heel out of the orthosis. This quickly got to the point where he was
able to slide it completely off. I added a posterior aliplast foam
inverted U above the heel. This helped, but did not stop the problem. I
finally added a distal velcro ankle strap just proximal to the ankle.
This strap entered the posterior shell through a slot posteriorly and
looped around the ankle and exited from the same slot. It was then
attached to the outside of the shell with self adhesive velcro. It was
long enough so that when applying the posterior section, it could be
loosened to allow the foot to be slid through the strap without needing
to thread the strap into the slot each time. This worked fairly well,
but the pt. still managed to slide his heel up. It did, however, prevent
him from sliding it all the way off!
Before I begin this second version, I thought I'd bring this to you all
for suggestions. Does anyone out there have experience with this type
of patient? If so, I'd love to hear from you. I am requesting ideas on
brace design(anterior shell over posterior shell vs. anterior into
posterior, length of the anterior shell, foam lined vs non lined, type
and thickness of plastic, joint type, etc.) and suggestions for keeping
the heel in place.
Thanks in advance for sharing your knowledge.
Mark Seibel CPO
==================================================================Responses:
Ask the orthopedist what the patient's prognosis is. Does he think the
pseudoarthosis will resolve (you said tib, fib also?). If so, when?
Would the doc, would you, prefer the KAFO over a long, ideally Ertl,
TTA
for the rest of your life?
==================================================================
Hi,
I have indeed had similiar patients, and recommend 1/8th copolymer with
1/8th liner posterior cuffs KAFO with a 1/2 wide dacron IRD strap
securing the foot into the heel. If the heel is not secured all the
time, his translation shall result in incongruency in the joint
placement and a fracture potential. I use unlined 1 or 2mm low density
polyethylene interiorly overlapping tongue to keep the tibia and femur
secured and maintain good circumferential pressure (like a Sarmiento).
I have used tamarack free motion pedi joints and Becker infant free
motion aluminum knee joints.
Good luck,
==================================================================
Use a molded SMO that interlocks with the AFO section of your KAFO.
OR, attach the KAFO to a hightop or 3/4 top shoe and rely on the laces
to
keep it in place.
==================================================================
Here's my two cents worth: I see no need to cross the knee joint for a
mid shaft problem, nor do I see a need to inhibit a perfectly good
ankle. I would make a bivalved free hinged ankle PTB style afo, pad only
the anterior section, and make sure it is an absolutely intimate fit. I
have followed two children with this problem from birth, both are now in
their 20's. You can make it a PTB style but I think you're fooling
yourself if you really think they unweight the pseudoarthrosis. The real
benefit to making it in this fashion is to have as long of lever arms as
possible to prevent angular deformities at the defect. The best place
for management of these problems is the Center for Limb Lengthening in
Baltimore MD, DR Paley has probably seen more than anyone in the US.
Good Luck, nice case presentation. You will enjoy a patient and a family
like this. Working with a person from childhood to adulthood is one of
the most enjoyable aspects of my 30 years in the biz.
==================================================================
Never had this problem before, but I'm imagining the possibility of
placing a piece or pieces of alpha liner material into the anterior
shell section and possibly the posterior section. The shell would need
to key in to prevent shifting, but I would think the traction of the
liner material against the skin would prevent shifting of the brace down
the leg. OWW sells sheet material of their liners and they have a
velcro compatible version (spirit fabric).
Good luck.
==================================================================
I did have an infant several years ago with the same presenting
diagnosis
and condition. I made one rigid KAFO and two jointed KAFOs very
similar in
design to yours in the span of about 18 months beginning at age 3
months. I
never encountered the difficulties you faced, and she did well with
the
orthosis on. She did, however, manage to break her leg three times when
the
KAFO was off (in the pool and in the bath). This ultimately led to the
very
difficult decision by the parents and the pediatric orthopedist to have
an
elective amputation of the limb. She is now an excellent prosthetic
user
with much greater mobility. I don't have any specific suggestions
regarding
keeping the foot seated other than making sure you have excellent
contours
around the calcaneus. It seems to me that as a toddler, your patient
should
lose some of the baby fat that can make fitting and infant so
difficult.
The anatomy should become more pronounced and the decreased tissue
should
give less room to wiggle. I hope you get some more detailed
recommendations
from others, but best of luck in any case.
Kind regards,
==================================================================
please go to www.PHATBRACES.com for full information
==================================================================
IMPORTANT WARNING: The information in this message (and the documents attached to it, if any) is confidential and may be legally privileged. It is intended solely for the addressee. Access to this message by anyone else is unauthorized. If you are not the intended recipient, any disclosure, copying, distribution or any action taken, or omitted to be taken, in reliance on it is prohibited and may be unlawful. If you have received this message in error, please delete all electronic copies of this message (and the documents attached to it, if any), destroy any hard copies you may have created and notify me immediately by replying to this email. Thank you.
********************
To unsubscribe, send a message to: <Email Address Redacted> with
the words UNSUB OANDP-L in the body of the
message.
If you have a problem unsubscribing,or have other
questions, send e-mail to the moderator
Paul E. Prusakowski,CPO at <Email Address Redacted>
OANDP-L is a forum for the discussion of topics
related to Orthotics and Prosthetics.
Public commercial postings are forbidden. Responses to inquiries
should not be sent to the entire oandp-l list. Professional credentials
or affiliations should be used in all communications.
Citation
Mark Seibel, “Houdini with Neurofibromatosis, Summary of Responses,” Digital Resource Foundation for Orthotics and Prosthetics, accessed November 5, 2024, https://library.drfop.org/items/show/225267.
