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In a message dated 7/17/2000 12:37:48 PM Pacific Daylight Time,

cmontana@... writes:

<< Does anyone have experience with wearing compression hose? We're

trying to bring down the swelling in my right foot and lower leg so

that I can get a good fit on an AFO. My thought is that maybe there's

another reason that foot swells more than the other. Compression hose

drive me nuts! because my toes are so weak and I feel like they're

getting squashed. The thought of wearing compression hose

indefinitely, even after I get the AFO, is not a pretty thought. Do

you have some thoughts on this?

>>

My Gma was very swollen at times. She wore anklets. They are nylons that go

on like a low sock. I would try that . They worked great for her. She bought

them at Longs. She said they were hard to find.

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I have had to wear compression hose off and on several times. There are

several different types. Some are opened toed and others aren't. Plus you can

get different strength's of compression hose.

I don't know if your hands are affected but mine are so it makes it really

hard to put them on. Taking off is really easy.

Can they not take the casting early in the day before your leg in fully

swollen? After all the casting needs to work for you when your legs are

swollen also.

One more thing I can add to this. Do your legs swell often? DO they swell a

lot? If they do then it is best for you to use at least a moderate

compression hose in order to keep from damaging your skin. My dad has CMT

and his legs have blotches on them reddish to purple blotches. This is

damaged skin. When he gets a sore on his leg he has to pay MAJOR attention to

it due to the damaged skin due to the constant swelling of his legs.

I try to be very careful with my own legs because of this problem. I don't

want to go through what my father has had to.

Take care, Jeanie

*************************

In a message dated 7/17/00 12:37:35 PM Pacific Daylight Time,

cmontana@... writes:

<< Does anyone have experience with wearing compression hose? We're

trying to bring down the swelling in my right foot and lower leg so

that I can get a good fit on an AFO. My thought is that maybe there's

another reason that foot swells more than the other. Compression hose

drive me nuts! because my toes are so weak and I feel like they're

getting squashed. The thought of wearing compression hose

indefinitely, even after I get the AFO, is not a pretty thought. Do

you have some thoughts on this?

>>

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Guest guest

Have you tried sleeping with your feet elevated a few inches? It can make a

world of difference. Resting during the day with your feet higher than your

heart can also help. Obviously, most recliner chairs can't get your feet that

high. I have the foot of my bed up a bit (small block under my sice of the

mattress) and I have no more problem with swelling feet. If you don't have

heart or breathing complications it could help you.

Just a non-invasive suggestion.

Kat

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Guest guest

Hi, Jeanie.

Thanks for your insights.

The foot that is most affected by CMT is the one with the most edema.

Edema extends upwards to mid-calf level when at its worst. Seems

affected by heat as well as meds, and also inactivity will make it

worse. Yes, orthotist can take the casting early in the day, but I

think he is being cautious in a good way in that he wants the AFO to

fit, and I understand the AFO is solid and doesn't " breathe. "

The swelling in that foot is almost constant, although it does go

down some at night. It's much better with the comp. hose - no doubt

about that. I think some medical investigation needs to be done on

the dis-similar swelling between feet, but that's kind of a " here we

go again " thing - another round of doctors, diagnoses, etc. Boo.

Also, this problem is worsened by the weather and here in Texas out

summers, particularly the last couple of years, are just awful.

Unrelenting heat, often high humidity. I am better in fall and

winter. Of course then my feet are frozen! But somehow it's a lot

easier to warm up cold feet (for me) than to cool hot and swollen

feet. Does any of that make sense?

Anyway, thanks again for the good insights. Carolyn

> I have had to wear compression hose off and on several times. There

are

> several different types. Some are opened toed and others aren't.

Plus you can

> get different strength's of compression hose.

> I don't know if your hands are affected but mine are so it makes it

really

> hard to put them on. Taking off is really easy.

> Can they not take the casting early in the day before your leg in

fully

> swollen? After all the casting needs to work for you when your legs

are

> swollen also.

> One more thing I can add to this. Do your legs swell often? DO they

swell a

> lot? If they do then it is best for you to use at least a moderate

> compression hose in order to keep from damaging your skin. My dad

has CMT

> and his legs have blotches on them reddish to purple blotches. This

is

> damaged skin. When he gets a sore on his leg he has to pay MAJOR

attention to

> it due to the damaged skin due to the constant swelling of his

legs.

> I try to be very careful with my own legs because of this problem.

I don't

> want to go through what my father has had to.

> Take care, Jeanie

> *************************

> In a message dated 7/17/00 12:37:35 PM Pacific Daylight Time,

> cmontana@s... writes:

>

> << Does anyone have experience with wearing compression hose? We're

> trying to bring down the swelling in my right foot and lower leg

so

> that I can get a good fit on an AFO. My thought is that maybe

there's

> another reason that foot swells more than the other. Compression

hose

> drive me nuts! because my toes are so weak and I feel like they're

> getting squashed. The thought of wearing compression hose

> indefinitely, even after I get the AFO, is not a pretty thought.

Do

> you have some thoughts on this?

> >>

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Carolyn, Lamar here

You describe an identical edema to that I have. My mother and grandmother also

had it. Much worse in the leg with most damage from CMT. For me, walking and

exercise seem to help. Muscle's " massage " the veins encouraging blood flow

through thousands of valves. I believe the muscle loss contributes to a

" flabbiness " in the veins, by failing to give them support. Therefore a pooling

of blood occurs leading to edema.

I am a heavy person, but not all in my family are. None with CMT have the

characteristic " stork leg " appearance. Our calves are large and maintain shape,

but are soft and not muscular.

I do find the Toe-off gives me lateral support and edema is better with it than

with my others. I will caution you and others to not have the AFO straps tight

enough to impair circulation. This also leads to edema.

Re: compression hose

Hi, Jeanie.

Thanks for your insights.

The foot that is most affected by CMT is the one with the most edema.

Edema extends upwards to mid-calf level when at its worst. Seems

affected by heat as well as meds, and also inactivity will make it

worse. Yes, orthotist can take the casting early in the day, but I

think he is being cautious in a good way in that he wants the AFO to

fit, and I understand the AFO is solid and doesn't " breathe. "

The swelling in that foot is almost constant, although it does go

down some at night. It's much better with the comp. hose - no doubt

about that. I think some medical investigation needs to be done on

the dis-similar swelling between feet, but that's kind of a " here we

go again " thing - another round of doctors, diagnoses, etc. Boo.

Also, this problem is worsened by the weather and here in Texas out

summers, particularly the last couple of years, are just awful.

Unrelenting heat, often high humidity. I am better in fall and

winter. Of course then my feet are frozen! But somehow it's a lot

easier to warm up cold feet (for me) than to cool hot and swollen

feet. Does any of that make sense?

Anyway, thanks again for the good insights. Carolyn

> I have had to wear compression hose off and on several times. There

are

> several different types. Some are opened toed and others aren't.

Plus you can

> get different strength's of compression hose.

> I don't know if your hands are affected but mine are so it makes it

really

> hard to put them on. Taking off is really easy.

> Can they not take the casting early in the day before your leg in

fully

> swollen? After all the casting needs to work for you when your legs

are

> swollen also.

> One more thing I can add to this. Do your legs swell often? DO they

swell a

> lot? If they do then it is best for you to use at least a moderate

> compression hose in order to keep from damaging your skin. My dad

has CMT

> and his legs have blotches on them reddish to purple blotches. This

is

> damaged skin. When he gets a sore on his leg he has to pay MAJOR

attention to

> it due to the damaged skin due to the constant swelling of his

legs.

> I try to be very careful with my own legs because of this problem.

I don't

> want to go through what my father has had to.

> Take care, Jeanie

> *************************

> In a message dated 7/17/00 12:37:35 PM Pacific Daylight Time,

> cmontana@s... writes:

>

> << Does anyone have experience with wearing compression hose? We're

> trying to bring down the swelling in my right foot and lower leg

so

> that I can get a good fit on an AFO. My thought is that maybe

there's

> another reason that foot swells more than the other. Compression

hose

> drive me nuts! because my toes are so weak and I feel like they're

> getting squashed. The thought of wearing compression hose

> indefinitely, even after I get the AFO, is not a pretty thought.

Do

> you have some thoughts on this?

> >>

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Carolyn, Lamar here

You describe an identical edema to that I have. My mother and grandmother also

had it. Much worse in the leg with most damage from CMT. For me, walking and

exercise seem to help. Muscle's " massage " the veins encouraging blood flow

through thousands of valves. I believe the muscle loss contributes to a

" flabbiness " in the veins, by failing to give them support. Therefore a pooling

of blood occurs leading to edema.

I am a heavy person, but not all in my family are. None with CMT have the

characteristic " stork leg " appearance. Our calves are large and maintain shape,

but are soft and not muscular.

I do find the Toe-off gives me lateral support and edema is better with it than

with my others. I will caution you and others to not have the AFO straps tight

enough to impair circulation. This also leads to edema.

Re: compression hose

Hi, Jeanie.

Thanks for your insights.

The foot that is most affected by CMT is the one with the most edema.

Edema extends upwards to mid-calf level when at its worst. Seems

affected by heat as well as meds, and also inactivity will make it

worse. Yes, orthotist can take the casting early in the day, but I

think he is being cautious in a good way in that he wants the AFO to

fit, and I understand the AFO is solid and doesn't " breathe. "

The swelling in that foot is almost constant, although it does go

down some at night. It's much better with the comp. hose - no doubt

about that. I think some medical investigation needs to be done on

the dis-similar swelling between feet, but that's kind of a " here we

go again " thing - another round of doctors, diagnoses, etc. Boo.

Also, this problem is worsened by the weather and here in Texas out

summers, particularly the last couple of years, are just awful.

Unrelenting heat, often high humidity. I am better in fall and

winter. Of course then my feet are frozen! But somehow it's a lot

easier to warm up cold feet (for me) than to cool hot and swollen

feet. Does any of that make sense?

Anyway, thanks again for the good insights. Carolyn

> I have had to wear compression hose off and on several times. There

are

> several different types. Some are opened toed and others aren't.

Plus you can

> get different strength's of compression hose.

> I don't know if your hands are affected but mine are so it makes it

really

> hard to put them on. Taking off is really easy.

> Can they not take the casting early in the day before your leg in

fully

> swollen? After all the casting needs to work for you when your legs

are

> swollen also.

> One more thing I can add to this. Do your legs swell often? DO they

swell a

> lot? If they do then it is best for you to use at least a moderate

> compression hose in order to keep from damaging your skin. My dad

has CMT

> and his legs have blotches on them reddish to purple blotches. This

is

> damaged skin. When he gets a sore on his leg he has to pay MAJOR

attention to

> it due to the damaged skin due to the constant swelling of his

legs.

> I try to be very careful with my own legs because of this problem.

I don't

> want to go through what my father has had to.

> Take care, Jeanie

> *************************

> In a message dated 7/17/00 12:37:35 PM Pacific Daylight Time,

> cmontana@s... writes:

>

> << Does anyone have experience with wearing compression hose? We're

> trying to bring down the swelling in my right foot and lower leg

so

> that I can get a good fit on an AFO. My thought is that maybe

there's

> another reason that foot swells more than the other. Compression

hose

> drive me nuts! because my toes are so weak and I feel like they're

> getting squashed. The thought of wearing compression hose

> indefinitely, even after I get the AFO, is not a pretty thought.

Do

> you have some thoughts on this?

> >>

------------------------------------------------------------------------------

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Carolyn, Lamar here

You describe an identical edema to that I have. My mother and grandmother also

had it. Much worse in the leg with most damage from CMT. For me, walking and

exercise seem to help. Muscle's " massage " the veins encouraging blood flow

through thousands of valves. I believe the muscle loss contributes to a

" flabbiness " in the veins, by failing to give them support. Therefore a pooling

of blood occurs leading to edema.

I am a heavy person, but not all in my family are. None with CMT have the

characteristic " stork leg " appearance. Our calves are large and maintain shape,

but are soft and not muscular.

I do find the Toe-off gives me lateral support and edema is better with it than

with my others. I will caution you and others to not have the AFO straps tight

enough to impair circulation. This also leads to edema.

Re: compression hose

Hi, Jeanie.

Thanks for your insights.

The foot that is most affected by CMT is the one with the most edema.

Edema extends upwards to mid-calf level when at its worst. Seems

affected by heat as well as meds, and also inactivity will make it

worse. Yes, orthotist can take the casting early in the day, but I

think he is being cautious in a good way in that he wants the AFO to

fit, and I understand the AFO is solid and doesn't " breathe. "

The swelling in that foot is almost constant, although it does go

down some at night. It's much better with the comp. hose - no doubt

about that. I think some medical investigation needs to be done on

the dis-similar swelling between feet, but that's kind of a " here we

go again " thing - another round of doctors, diagnoses, etc. Boo.

Also, this problem is worsened by the weather and here in Texas out

summers, particularly the last couple of years, are just awful.

Unrelenting heat, often high humidity. I am better in fall and

winter. Of course then my feet are frozen! But somehow it's a lot

easier to warm up cold feet (for me) than to cool hot and swollen

feet. Does any of that make sense?

Anyway, thanks again for the good insights. Carolyn

> I have had to wear compression hose off and on several times. There

are

> several different types. Some are opened toed and others aren't.

Plus you can

> get different strength's of compression hose.

> I don't know if your hands are affected but mine are so it makes it

really

> hard to put them on. Taking off is really easy.

> Can they not take the casting early in the day before your leg in

fully

> swollen? After all the casting needs to work for you when your legs

are

> swollen also.

> One more thing I can add to this. Do your legs swell often? DO they

swell a

> lot? If they do then it is best for you to use at least a moderate

> compression hose in order to keep from damaging your skin. My dad

has CMT

> and his legs have blotches on them reddish to purple blotches. This

is

> damaged skin. When he gets a sore on his leg he has to pay MAJOR

attention to

> it due to the damaged skin due to the constant swelling of his

legs.

> I try to be very careful with my own legs because of this problem.

I don't

> want to go through what my father has had to.

> Take care, Jeanie

> *************************

> In a message dated 7/17/00 12:37:35 PM Pacific Daylight Time,

> cmontana@s... writes:

>

> << Does anyone have experience with wearing compression hose? We're

> trying to bring down the swelling in my right foot and lower leg

so

> that I can get a good fit on an AFO. My thought is that maybe

there's

> another reason that foot swells more than the other. Compression

hose

> drive me nuts! because my toes are so weak and I feel like they're

> getting squashed. The thought of wearing compression hose

> indefinitely, even after I get the AFO, is not a pretty thought.

Do

> you have some thoughts on this?

> >>

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Re: Re: compression hose

>Have you tried sleeping with your feet elevated a few inches? It can make a

>world of difference. Resting during the day with your feet higher than your

>heart can also help. Obviously, most recliner chairs can't get your feet

that

>high. I have the foot of my bed up a bit (small block under my sice of the

>mattress) and I have no more problem with swelling feet. If you don't have

>heart or breathing complications it could help you.

>Just a non-invasive suggestion.

>

>Kat

>

>>>>> I put two pillows on foot rest of recliner to elavate me feet during

the day. ~>Becky M.

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Guest guest

Once again, thanks for the insights. The breatheable AFOs sound very

interesting - I will check with the orthotist when I go in for the

casting. Still not quite ready to do that, because I want to see if I

can get the swelling a bit more stable first (don't think I can ever

get it down the way I would like). Another person also mentioned the

lopsided swelling, so I'm glad I'm not the only one.

The current high heat & high humidity here in Texas is really a

bummer. Also seems that barometric pressure has a definite influence

on joint pain.

Have a good day. Carolyn

> Hi ya, Most AFO's are solid backed but not all. Libby

(Charnicoma) has

> AFO's that have areas that are open in the back to allow for

breathing but

> yet are very sturdy. I was shocked and very empresses when I saw

them.

> When you wear the AFO you will wither need to wear a sock or a

compression

> hose. You cannot have bare skin against the plastic. It will stick

and get

> irritated.

> I have the same trouble with my feet swelling in the heat.

Especially if

> there is humidity involved. Where I live in Oregon we don't suffer

with

> humidity.

> Last month when I was in Arkansas and it was very high humidity and

in the

> upper 80* my legs and ankles swelled up and over my shoes. It hurt

so bad,

> they got so hot. I agree with you. It is easier for me to warm my

feet than

> to cool my feet. If my feet are hot I don't walk. But if their cold

I can

> still get around.

> My right foot swells more than my left foot due to surgery. My

right ankle

> has been fused and my left hasn't.

> Jeanie

> Moonglow21@a... or HREF= " Jeanie421@y... " >Jeanie421@y...

> come and check out Charcot-Marie-Toothonlinechat at HREF= " http://www.egroups.com/group/Charcot-Marie-

Toothonlinechat " >http://www.e

> groups.com/group/Charcot-Marie-Toothonlinechat

>

>

> *****************

> In a message dated 7/19/00 7:11:22 AM Pacific Daylight Time,

> cmontana@s... writes:

>

> << Hi, Jeanie.

> Thanks for your insights.

> The foot that is most affected by CMT is the one with the most

edema.

> Edema extends upwards to mid-calf level when at its worst. Seems

> affected by heat as well as meds, and also inactivity will make it

> worse. Yes, orthotist can take the casting early in the day, but I

> think he is being cautious in a good way in that he wants the AFO

to

> fit, and I understand the AFO is solid and doesn't " breathe. "

>

> The swelling in that foot is almost constant, although it does go

> down some at night. It's much better with the comp. hose - no

doubt

> about that. I think some medical investigation needs to be done on

> the dis-similar swelling between feet, but that's kind of a " here

we

> go again " thing - another round of doctors, diagnoses, etc. Boo.

>

> Also, this problem is worsened by the weather and here in Texas

out

> summers, particularly the last couple of years, are just awful.

> Unrelenting heat, often high humidity. I am better in fall and

> winter. Of course then my feet are frozen! But somehow it's a lot

> easier to warm up cold feet (for me) than to cool hot and swollen

> feet. Does any of that make sense?

>

> Anyway, thanks again for the good insights. Carolyn

> >>

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  • 1 year later...
Guest guest

What is a compression hose and what is it used for?

Belinda

> Anne wears them. Mostly when she knows that there will be some

> exercise. They won't work when you don't walk. We bought them in

> Alkmaar, on prescription. Didn't cost us anything.

> I think Alkmaar is to far for you, although you are welcome to our

> house.

>

> Timo (The Netherlands)

>

> > When my husband was diagnosed with MSA several years ago, his

> neurologist at Mayo Clinic, ville, prescribed compression

> hose. They are quite costly. Mayo has been ordering them for him,

> but we are wondering if anyone in the group wears them, if so,

where

> do they purchase them. We will be able to get a prescription.

> Winifred

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Guest guest

What is a compression hose and what is it used for?

Belinda

> Anne wears them. Mostly when she knows that there will be some

> exercise. They won't work when you don't walk. We bought them in

> Alkmaar, on prescription. Didn't cost us anything.

> I think Alkmaar is to far for you, although you are welcome to our

> house.

>

> Timo (The Netherlands)

>

> > When my husband was diagnosed with MSA several years ago, his

> neurologist at Mayo Clinic, ville, prescribed compression

> hose. They are quite costly. Mayo has been ordering them for him,

> but we are wondering if anyone in the group wears them, if so,

where

> do they purchase them. We will be able to get a prescription.

> Winifred

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Guest guest

Winfred,

My husband Al has been wearing compression hose for years,

he also wears a belly band(like a corset) around the waist.

We get ours through the VA.

Ann from Soddy,TN

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Guest guest

Belinda,

It's not an " it " it's a " they " ! I had to laugh at your question.

(Not laughing at you, but with you.)

Compression hose are very tight elastic stockings which are specially

fitted to each person. They act to keep the blood from pooling in

the legs while standing, thus helping to aleviate fainting due to

orthostatic hypotension.

There is some contraversy as to how effective they are. Basically,

like most other things in MSA, they help some people and for others

don't seem to do much. They are difficult to put on since they are

so tight, and as Timo said should only be worn when standing or

wallking.

Carol & Rob

Lexington, MA

> > Anne wears them. Mostly when she knows that there will be some

> > exercise. They won't work when you don't walk. We bought them in

> > Alkmaar, on prescription. Didn't cost us anything.

> > I think Alkmaar is to far for you, although you are welcome to

our

> > house.

> >

> > Timo (The Netherlands)

> >

> > > When my husband was diagnosed with MSA several years ago, his

> > neurologist at Mayo Clinic, ville, prescribed compression

> > hose. They are quite costly. Mayo has been ordering them for

him,

> > but we are wondering if anyone in the group wears them, if so,

> where

> > do they purchase them. We will be able to get a prescription.

> > Winifred

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Guest guest

Belinda,

It's not an " it " it's a " they " ! I had to laugh at your question.

(Not laughing at you, but with you.)

Compression hose are very tight elastic stockings which are specially

fitted to each person. They act to keep the blood from pooling in

the legs while standing, thus helping to aleviate fainting due to

orthostatic hypotension.

There is some contraversy as to how effective they are. Basically,

like most other things in MSA, they help some people and for others

don't seem to do much. They are difficult to put on since they are

so tight, and as Timo said should only be worn when standing or

wallking.

Carol & Rob

Lexington, MA

> > Anne wears them. Mostly when she knows that there will be some

> > exercise. They won't work when you don't walk. We bought them in

> > Alkmaar, on prescription. Didn't cost us anything.

> > I think Alkmaar is to far for you, although you are welcome to

our

> > house.

> >

> > Timo (The Netherlands)

> >

> > > When my husband was diagnosed with MSA several years ago, his

> > neurologist at Mayo Clinic, ville, prescribed compression

> > hose. They are quite costly. Mayo has been ordering them for

him,

> > but we are wondering if anyone in the group wears them, if so,

> where

> > do they purchase them. We will be able to get a prescription.

> > Winifred

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Guest guest

Compression

hose help keep the B/P up. With O/H the blood does not pump up the legs

as fast as it should, thus the compression hose are to help pump the

blood up, also that is why Al wears the belly band(almost like

compression around the waist).

Ann from Soddy,TN

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Compression

hose help keep the B/P up. With O/H the blood does not pump up the legs

as fast as it should, thus the compression hose are to help pump the

blood up, also that is why Al wears the belly band(almost like

compression around the waist).

Ann from Soddy,TN

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Guest guest

Carol,

Thank you for explaining it to me. For some reason I was thinking of

some sort of rubber hose and not some kind of support hose. I am glad

that I made you laugh. It makes me happy to know that! :>) >Smiles!<

love and gentle hugs,

Belinda

> > > Anne wears them. Mostly when she knows that there will be some

> > > exercise. They won't work when you don't walk. We bought them

in

> > > Alkmaar, on prescription. Didn't cost us anything.

> > > I think Alkmaar is to far for you, although you are welcome to

> our

> > > house.

> > >

> > > Timo (The Netherlands)

> > >

> > > > When my husband was diagnosed with MSA several years ago, his

> > > neurologist at Mayo Clinic, ville, prescribed

compression

> > > hose. They are quite costly. Mayo has been ordering them for

> him,

> > > but we are wondering if anyone in the group wears them, if so,

> > where

> > > do they purchase them. We will be able to get a

prescription.

> > > Winifred

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