Alignment Problems Reply: Part II
Description
Collection
Title:
Alignment Problems Reply: Part II
Date:
8/15/1999
Text:
From: Stacey Asby < <Email Address Redacted> >
To: Tony van der Waarde < <Email Address Redacted> >
Date: Monday, August 09, 1999 3:51 AM
TW> StacEy, (or desperate Mrs Asby): I've been debating how I can best
respond to your dilemma.
SA> Well hello Tony. Glad to see you haven't lost your sense of humor at
least. :o) If you ask anyone here, local, I'm sure they would say
run, run, as fast as you can. LOL!
TW> The thing you've been doing: ie: your own doctoring with socks
will always be a reality in any future prostheses.
SA> Tony: I understand the reality of this problem because of my
sensitivity-- being able to feel even the compression of a sock. I
know playing with socks will never be something of the past, and of
course my having to do this so much now is because the socket is way
too large and instead of a rigid socket holding me in place, I am
relying on a multitude of socks.
TW> The intermittent edema you've been experiencing is not something
that can be cured, so it seems, unless you find a vascular
specialist who has prior experience in this area.
Any cushioned liner will do, though I've had the best results with
Alpha locking liners (6 or 9 mm).
SA> Yes, taking a lasix when absolutely necessary has usually resolved
any major problems with this, and I have also found that once I am
in a well fitting socket, my leg will shrink slightly but never
swell to a point where the socket is no longer able to be worn. Not
sure why this is, but fortunately seems to be the case. I have found
the Alpha liner with or without pin and the Silipos sheath liner, as
far as my skin goes, but so far eliminating any movement in the
socket to help eliminate alignment issues has gotten us to this very
intimate fitting socket, and all the other features I mentioned.
TW> It's up to you to alter the pin liners with the ones w/o pins and a
suspension sleeve plus suction valve.
SA> The valve suspension and Alpha with valve suspension was great as
far as function and comfort, but as I have told many, the
unreliability of that suspension holding is just too much of an
inconvenience to deal with all the time. I can't tolerate that
little bit of give when a nick lets air in the socket just as only
walking that way for one day at the convention caused the opening on
my limb.
TW> Again, you've tried both and don't know how you feel in either
design. Stick with the SC socket design, though you may not use it
for suspension a whole lot.
SA> Quite truthfully Tony, I prefer not to have the SC part of the
socket as it obviously hampers the over-all finished appearance, and
if the socket is fitting well enough, I am able to use my muscles to
control the leg well enough. But when the alignment isn't correct
it's much more difficult. I cannot tolerate the pin system unless I
have the sleeve in conjunction with it, because of the milking
action.
TW> Though I've not done a direct evaluation of you, I've seen you alter
socks and seen your RL while in the swimming pool. It has a lot of
redundant tissue and flabby skin,
SA> Hmm..is this like telling a lady she has wrinkles? LOL!
TW>...which can only be tightened up via an operation or a lot of
swimming and exercising in general.
SA> Now you have my curiosity Tony. How can you tighten tissue without
muscle attached below? I have always been told it's not possible,
and I think I have some pretty good muscle tone other than the very
end of the RL. Marc has even said my hamstring muscle is quite
pronounced, and we've had to make quite a cut away for it. I am
cautious of surgery for any reason, as you can well imagine. The way
my luck goes that would be the surgery would get infected and never
heal properly or something, not to mention that trying to do without
a limb for any recovery time would be quite difficult around here.
:o) I have wondered about revision though, and if it would be
suggested in my case even, then would it improve anything?
TW> Using an inflatable insert may be one area which could give some
relief, though my own experience with them has been minimal.
SA> I had discussed this with both Dan and Marc and others as well, and
the general consensus seems to be that they are not very reliable,
and I thought that having to mess with digging for a device to
connect and inflate or deflate the pump all the time, might be more
of a pain than playing with socks?
TW> The choice of foot is not as critical as the socket design and will
leave that with you to determine: you've had lots of choices thus
far!
SA> I completely agree, and it has only been this very last socket since
I returned home that the socket has fit well. They only were able to
achieve it by digitally copying this socket and shrinking it by the
10 ply I wear.
Every time Marc tried to improve it my indenting in one spot or
another I had problems with nerve pressure, which I'm beginning to
think
in that leg.
TW> Personally, I like the Genesis II foot a lot!
SA> Well, I did try this, as you know, and while the foot was an okay
foot, it didn't improve the problems I am trying to correct
with this foot, and that's being able to walk up an incline
without contorting my hips or pushing the leg out to the side.
I also noticed the remarkable ability to go up stairs and not feel
the energy exhausted that I did with the Genesis and all the other
feet I have used. Now I'm sure some may think it's just the FF name
I am stuck on, by I think you know me well enough by now to
understand that I don't frankly care who makes it or how much the
cost is...If it's doing what I need it to do, it's the foot I am
going to choose and speak highly of it.
TW> Saving your own flesh and blood foot is more of a concern to me. The
types of shoes I've seen you w
category and would recommend you buy a pair of good cross-trainers
and a custom made foot orthosis. This will also relieve some of the
stress on your back.
SA> Now, them's fightin' words! LOL! I understand the concern everyone
has for the shoes I wear, and the sandals you saw me wearing are the
most lax I have as far as foot support, but I assure you that I have
tried multitudes of shoes, orthopedic and all. Aside from probably
immersing myself in a complete state of depression at having to wear
some of them, they truthfully never helped my foot and actually
caused more problems than not.
Because of the heel cord tightness in the sound foot and the drop foot,
I HAVE to wear a slight heel, or the middle of my foot is pu
much stress, and as I'm sure you'll notice there are few orthopedic or
sensible' shoes which have a heel to it. Sneakers are the same, even
with there insoles, and can with all honesty say, that the pair of
correct running shoes I own are the MOST uncomfortable shoes I have.
Then we get into the heel height and finding a shoe which doesn't rub or
cut the sound foot anywhere, and I don't have to say that
is my LEAST favorite activity!! My podiatrist though, has even
concluded that the shoes I have chosen, even those sandals you saw, are
probably the best, despite our numerous attempts to fit me with insoles
even.
TW> I wished, I could give Mark a hand to help him as a Tandem-Team.
Doing advice-giving from a long-
sometimes creating false hopes.
SA> Well, I'm sure that Marc would appreciate any input you could lend,
and at this stage has already conceded to the notion of receiving
input from anyone. Though I don't think that anyone but Dan and
Marc, and maybe now Ted to some degree, has any idea how much of a
unique situation and difficult one this is.
TW> I don't for one minute suggest you come over here to Vancouver right
now and will avail myself in any way possible to who-ever your
prosthetist of choice is or will be. That would include being in
Atlanta on-site for a while on a retainer basis via your
prosthetic lab.
SA> Well, feel free to call Marc and discuss any of this with him, as I
said at this point I think he may welcome any relief from the
situation. I understand it's a bit deflating to the ego, and just
as I felt uncomfortable in questioning Dan about input from another
CP, I feel this is uncomfortable for Marc also. I also think that
his frustration is taking over and I can read through the comments
when he is now suggesting I take sockets home to just try, after
already stating it's not comfortable, or that we need to maybe give
up on the particular foot? After 4 hours of spinning in circles
with alignment issues though all I can do is concede at times for
both of our sanity's sake.
> The problem at this point seems to be solely in the alignment and no
longer in the socket, but how to resolve this is amazingly still
unresolved.
TW> On a personal note: I'm staring a HD fitting tomorrow for a lady
from Montana, who's been an amputee for 34 years and has had pretty
bad results from what I can see. At least amputees at that level
don't have the types of problems a BK like yourself faces.
SA> No they have many more I'd think. LOL!
TW> After trying to find a match in her own state we decide that this
was a better alternative, but will still attempt to find a colleague
closer to her home for future follow-up!
SA> Well like I said feel free to call him if you like, even if it's
just to say hello. He said he hasn't even looked at his computer.
Hopefully things by your way are settling back to normal now. :o)
TTYS, and thanks for the response
-----------------------------------------------------------------------
From: IN% <Email Address Redacted> Stacey Asby
To: IN% <Email Address Redacted> Wayne Renardson
CC:
Subj: Fw: prosthetic problems
From: <Email Address Redacted> < <Email Address Redacted> >
I've read your letter three times. There probably is no answer,
especially since the sound side has suffered from all this. Have your
prosthetist try a Phoenix Foot. Work and work and with the various
durometers. This foot was the old Dyna-flex you have now but with
several improvements. (If it doesn't work, SEND IT BACK )
I'll read your letter again and write more later.
Bob McCulloch
-----------------------------------------------------------------------
From: Stacey Asby < <Email Address Redacted> >
To: <Email Address Redacted> < <Email Address Redacted> >
>Dear Bob; Thank you for responding.
BM> I've read your letter three times. There probably is no answer,
especially since the sound side has suffered from all this.
SA> Well, the question I keep raising is how did we manage this twice
before if it has do do with something other than the prosthesis? I
am currently still walking comfortably, aside from the multitude of
socks needed to make it that way, it still works, just not as well
as I would like or need a foot to allow me to.
Now, that is NOT what I want to hear Bob. :o)
BM> Have your prosthetist try a Phoenix Foot. Work and work and with
the various durometers.
SA> I will suggest this, but having been through many discussions and
foot trials, some many months ago, I am fairly sure this was either
one that we did try or just recently discussed trying. Hopefully the
latter. LOL!
-----------------------------------------------------------------------
From: IN% <Email Address Redacted> Stacey Asby
To: IN% <Email Address Redacted> Wayne Renardson
Subj: Fw: prosthetic problems
Hi Bob;
SA> Just noticed how bad my typing was on that last note, sorry about
that. :o)
BM> I'll stop suggesting things you DON'T want to hear. I'm trying to
picture all this.
SA> I'll see if I can help you to some degree on this. Click on this
site, should bring up a picture of me and my current leg from the
ACA convention.
<URL Redacted>
BM> You (I thought) brought up the other side, and I'm sure it is
becoming affected by the prosthetic side to some degree.
SA> Yes, that is true, it is being affected BY the prosthetic side and
is noticeable with callused areas under the foot, which I'm sure I
don't have to tell you is not a good thing.
BM> Keep talking to me and I will try to help, even though I haven't
yet. You're a tough individual, sounds like.
SA> Oh no, I'm very easy as long as you agree with me. :o) Look forward
to any further suggestions, and don't feel bad about not solving
this, others have been trying for a year.
-----------------------------------------------------------------------
From: Jan Stokosa < <Email Address Redacted> >
Subject: Re: BK Amputees Needs Advise
To: <Email Address Redacted>
Hello Stacey Asby -
It sounds like you have been through a tremendous effort and have
experienced much. I have worked with many people from all over the
country - most of whom are difficult/problem cases. Yours appears to
be a most challenging case. I have specialized in below-the-knee
amputations and prosthetic fitting for the past three years now. I would
be happy to discuss your situation with you on the telephone to
determine if I might offer some way to get past this and on to a more
comfortable, stable, and functional life. My Clinic number is
517-349-3130, toll free 888-STOKOSA;
Home 517-339-6115.
Yours in Health & Prosthetics - Jan Stokosa, C.P.
-----------------------------------------------------------------------
From: <Email Address Redacted> < <Email Address Redacted> >
To: Amputee Information Network < <Email Address Redacted> >
MB> One last thought Stacy: Since you clearly have a thoughtful
hardworking prosthetist and you have tried numerous different
component combinations, perhaps a paradigm shift is necessary.
Technology can be helpful to some degree, but perhaps for your sake,
you might need to learn to walk differently than you currently do.
Maybe smaller, less forceful steps would be beneficial. It certainly
involves changing a habit pattern but that doesn't mean it can't be
done. Models learn to walk differently and so do dancers. Once
again, I don't know if this is the answer, but if we are going to
think out of the box this is my contribution!
Mark Benveniste CP
-----------------------------------------------------------------------
********************
OANDP-L is a forum for the discussion of topics related to Orthotics and
Prosthetics.
Public commercial postings are forbidden. Responses to inquiries of a
commercial nature should not be sent to the entire oandp-l list. Responses
should be collected and reposted by the person asking the question.
Send a message to the list by sending to: <Email Address Redacted> To unsubscribe,
send a message to: <Email Address Redacted> with the words UNSUB OANDP-L in the body of the
message. All postings related to US-politics must use a subject line
starting with US-Politics:
Any questions should be directed to Paul E. Prusakowski, CPO at
<Email Address Redacted>
To: Tony van der Waarde < <Email Address Redacted> >
Date: Monday, August 09, 1999 3:51 AM
TW> StacEy, (or desperate Mrs Asby): I've been debating how I can best
respond to your dilemma.
SA> Well hello Tony. Glad to see you haven't lost your sense of humor at
least. :o) If you ask anyone here, local, I'm sure they would say
run, run, as fast as you can. LOL!
TW> The thing you've been doing: ie: your own doctoring with socks
will always be a reality in any future prostheses.
SA> Tony: I understand the reality of this problem because of my
sensitivity-- being able to feel even the compression of a sock. I
know playing with socks will never be something of the past, and of
course my having to do this so much now is because the socket is way
too large and instead of a rigid socket holding me in place, I am
relying on a multitude of socks.
TW> The intermittent edema you've been experiencing is not something
that can be cured, so it seems, unless you find a vascular
specialist who has prior experience in this area.
Any cushioned liner will do, though I've had the best results with
Alpha locking liners (6 or 9 mm).
SA> Yes, taking a lasix when absolutely necessary has usually resolved
any major problems with this, and I have also found that once I am
in a well fitting socket, my leg will shrink slightly but never
swell to a point where the socket is no longer able to be worn. Not
sure why this is, but fortunately seems to be the case. I have found
the Alpha liner with or without pin and the Silipos sheath liner, as
far as my skin goes, but so far eliminating any movement in the
socket to help eliminate alignment issues has gotten us to this very
intimate fitting socket, and all the other features I mentioned.
TW> It's up to you to alter the pin liners with the ones w/o pins and a
suspension sleeve plus suction valve.
SA> The valve suspension and Alpha with valve suspension was great as
far as function and comfort, but as I have told many, the
unreliability of that suspension holding is just too much of an
inconvenience to deal with all the time. I can't tolerate that
little bit of give when a nick lets air in the socket just as only
walking that way for one day at the convention caused the opening on
my limb.
TW> Again, you've tried both and don't know how you feel in either
design. Stick with the SC socket design, though you may not use it
for suspension a whole lot.
SA> Quite truthfully Tony, I prefer not to have the SC part of the
socket as it obviously hampers the over-all finished appearance, and
if the socket is fitting well enough, I am able to use my muscles to
control the leg well enough. But when the alignment isn't correct
it's much more difficult. I cannot tolerate the pin system unless I
have the sleeve in conjunction with it, because of the milking
action.
TW> Though I've not done a direct evaluation of you, I've seen you alter
socks and seen your RL while in the swimming pool. It has a lot of
redundant tissue and flabby skin,
SA> Hmm..is this like telling a lady she has wrinkles? LOL!
TW>...which can only be tightened up via an operation or a lot of
swimming and exercising in general.
SA> Now you have my curiosity Tony. How can you tighten tissue without
muscle attached below? I have always been told it's not possible,
and I think I have some pretty good muscle tone other than the very
end of the RL. Marc has even said my hamstring muscle is quite
pronounced, and we've had to make quite a cut away for it. I am
cautious of surgery for any reason, as you can well imagine. The way
my luck goes that would be the surgery would get infected and never
heal properly or something, not to mention that trying to do without
a limb for any recovery time would be quite difficult around here.
:o) I have wondered about revision though, and if it would be
suggested in my case even, then would it improve anything?
TW> Using an inflatable insert may be one area which could give some
relief, though my own experience with them has been minimal.
SA> I had discussed this with both Dan and Marc and others as well, and
the general consensus seems to be that they are not very reliable,
and I thought that having to mess with digging for a device to
connect and inflate or deflate the pump all the time, might be more
of a pain than playing with socks?
TW> The choice of foot is not as critical as the socket design and will
leave that with you to determine: you've had lots of choices thus
far!
SA> I completely agree, and it has only been this very last socket since
I returned home that the socket has fit well. They only were able to
achieve it by digitally copying this socket and shrinking it by the
10 ply I wear.
Every time Marc tried to improve it my indenting in one spot or
another I had problems with nerve pressure, which I'm beginning to
think
in that leg.
TW> Personally, I like the Genesis II foot a lot!
SA> Well, I did try this, as you know, and while the foot was an okay
foot, it didn't improve the problems I am trying to correct
with this foot, and that's being able to walk up an incline
without contorting my hips or pushing the leg out to the side.
I also noticed the remarkable ability to go up stairs and not feel
the energy exhausted that I did with the Genesis and all the other
feet I have used. Now I'm sure some may think it's just the FF name
I am stuck on, by I think you know me well enough by now to
understand that I don't frankly care who makes it or how much the
cost is...If it's doing what I need it to do, it's the foot I am
going to choose and speak highly of it.
TW> Saving your own flesh and blood foot is more of a concern to me. The
types of shoes I've seen you w
category and would recommend you buy a pair of good cross-trainers
and a custom made foot orthosis. This will also relieve some of the
stress on your back.
SA> Now, them's fightin' words! LOL! I understand the concern everyone
has for the shoes I wear, and the sandals you saw me wearing are the
most lax I have as far as foot support, but I assure you that I have
tried multitudes of shoes, orthopedic and all. Aside from probably
immersing myself in a complete state of depression at having to wear
some of them, they truthfully never helped my foot and actually
caused more problems than not.
Because of the heel cord tightness in the sound foot and the drop foot,
I HAVE to wear a slight heel, or the middle of my foot is pu
much stress, and as I'm sure you'll notice there are few orthopedic or
sensible' shoes which have a heel to it. Sneakers are the same, even
with there insoles, and can with all honesty say, that the pair of
correct running shoes I own are the MOST uncomfortable shoes I have.
Then we get into the heel height and finding a shoe which doesn't rub or
cut the sound foot anywhere, and I don't have to say that
is my LEAST favorite activity!! My podiatrist though, has even
concluded that the shoes I have chosen, even those sandals you saw, are
probably the best, despite our numerous attempts to fit me with insoles
even.
TW> I wished, I could give Mark a hand to help him as a Tandem-Team.
Doing advice-giving from a long-
sometimes creating false hopes.
SA> Well, I'm sure that Marc would appreciate any input you could lend,
and at this stage has already conceded to the notion of receiving
input from anyone. Though I don't think that anyone but Dan and
Marc, and maybe now Ted to some degree, has any idea how much of a
unique situation and difficult one this is.
TW> I don't for one minute suggest you come over here to Vancouver right
now and will avail myself in any way possible to who-ever your
prosthetist of choice is or will be. That would include being in
Atlanta on-site for a while on a retainer basis via your
prosthetic lab.
SA> Well, feel free to call Marc and discuss any of this with him, as I
said at this point I think he may welcome any relief from the
situation. I understand it's a bit deflating to the ego, and just
as I felt uncomfortable in questioning Dan about input from another
CP, I feel this is uncomfortable for Marc also. I also think that
his frustration is taking over and I can read through the comments
when he is now suggesting I take sockets home to just try, after
already stating it's not comfortable, or that we need to maybe give
up on the particular foot? After 4 hours of spinning in circles
with alignment issues though all I can do is concede at times for
both of our sanity's sake.
> The problem at this point seems to be solely in the alignment and no
longer in the socket, but how to resolve this is amazingly still
unresolved.
TW> On a personal note: I'm staring a HD fitting tomorrow for a lady
from Montana, who's been an amputee for 34 years and has had pretty
bad results from what I can see. At least amputees at that level
don't have the types of problems a BK like yourself faces.
SA> No they have many more I'd think. LOL!
TW> After trying to find a match in her own state we decide that this
was a better alternative, but will still attempt to find a colleague
closer to her home for future follow-up!
SA> Well like I said feel free to call him if you like, even if it's
just to say hello. He said he hasn't even looked at his computer.
Hopefully things by your way are settling back to normal now. :o)
TTYS, and thanks for the response
-----------------------------------------------------------------------
From: IN% <Email Address Redacted> Stacey Asby
To: IN% <Email Address Redacted> Wayne Renardson
CC:
Subj: Fw: prosthetic problems
From: <Email Address Redacted> < <Email Address Redacted> >
I've read your letter three times. There probably is no answer,
especially since the sound side has suffered from all this. Have your
prosthetist try a Phoenix Foot. Work and work and with the various
durometers. This foot was the old Dyna-flex you have now but with
several improvements. (If it doesn't work, SEND IT BACK )
I'll read your letter again and write more later.
Bob McCulloch
-----------------------------------------------------------------------
From: Stacey Asby < <Email Address Redacted> >
To: <Email Address Redacted> < <Email Address Redacted> >
>Dear Bob; Thank you for responding.
BM> I've read your letter three times. There probably is no answer,
especially since the sound side has suffered from all this.
SA> Well, the question I keep raising is how did we manage this twice
before if it has do do with something other than the prosthesis? I
am currently still walking comfortably, aside from the multitude of
socks needed to make it that way, it still works, just not as well
as I would like or need a foot to allow me to.
Now, that is NOT what I want to hear Bob. :o)
BM> Have your prosthetist try a Phoenix Foot. Work and work and with
the various durometers.
SA> I will suggest this, but having been through many discussions and
foot trials, some many months ago, I am fairly sure this was either
one that we did try or just recently discussed trying. Hopefully the
latter. LOL!
-----------------------------------------------------------------------
From: IN% <Email Address Redacted> Stacey Asby
To: IN% <Email Address Redacted> Wayne Renardson
Subj: Fw: prosthetic problems
Hi Bob;
SA> Just noticed how bad my typing was on that last note, sorry about
that. :o)
BM> I'll stop suggesting things you DON'T want to hear. I'm trying to
picture all this.
SA> I'll see if I can help you to some degree on this. Click on this
site, should bring up a picture of me and my current leg from the
ACA convention.
<URL Redacted>
BM> You (I thought) brought up the other side, and I'm sure it is
becoming affected by the prosthetic side to some degree.
SA> Yes, that is true, it is being affected BY the prosthetic side and
is noticeable with callused areas under the foot, which I'm sure I
don't have to tell you is not a good thing.
BM> Keep talking to me and I will try to help, even though I haven't
yet. You're a tough individual, sounds like.
SA> Oh no, I'm very easy as long as you agree with me. :o) Look forward
to any further suggestions, and don't feel bad about not solving
this, others have been trying for a year.
-----------------------------------------------------------------------
From: Jan Stokosa < <Email Address Redacted> >
Subject: Re: BK Amputees Needs Advise
To: <Email Address Redacted>
Hello Stacey Asby -
It sounds like you have been through a tremendous effort and have
experienced much. I have worked with many people from all over the
country - most of whom are difficult/problem cases. Yours appears to
be a most challenging case. I have specialized in below-the-knee
amputations and prosthetic fitting for the past three years now. I would
be happy to discuss your situation with you on the telephone to
determine if I might offer some way to get past this and on to a more
comfortable, stable, and functional life. My Clinic number is
517-349-3130, toll free 888-STOKOSA;
Home 517-339-6115.
Yours in Health & Prosthetics - Jan Stokosa, C.P.
-----------------------------------------------------------------------
From: <Email Address Redacted> < <Email Address Redacted> >
To: Amputee Information Network < <Email Address Redacted> >
MB> One last thought Stacy: Since you clearly have a thoughtful
hardworking prosthetist and you have tried numerous different
component combinations, perhaps a paradigm shift is necessary.
Technology can be helpful to some degree, but perhaps for your sake,
you might need to learn to walk differently than you currently do.
Maybe smaller, less forceful steps would be beneficial. It certainly
involves changing a habit pattern but that doesn't mean it can't be
done. Models learn to walk differently and so do dancers. Once
again, I don't know if this is the answer, but if we are going to
think out of the box this is my contribution!
Mark Benveniste CP
-----------------------------------------------------------------------
********************
OANDP-L is a forum for the discussion of topics related to Orthotics and
Prosthetics.
Public commercial postings are forbidden. Responses to inquiries of a
commercial nature should not be sent to the entire oandp-l list. Responses
should be collected and reposted by the person asking the question.
Send a message to the list by sending to: <Email Address Redacted> To unsubscribe,
send a message to: <Email Address Redacted> with the words UNSUB OANDP-L in the body of the
message. All postings related to US-politics must use a subject line
starting with US-Politics:
Any questions should be directed to Paul E. Prusakowski, CPO at
<Email Address Redacted>
Citation
“Alignment Problems Reply: Part II,” Digital Resource Foundation for Orthotics and Prosthetics, accessed November 24, 2024, https://library.drfop.org/items/show/212387.
